The consequences of disease and their measurement : impairments, disabilities and handicaps = Les conséquences de la maladie et leur mesure : déficiences, incapacités, désavantages [full issue]

WORLD HEALTH QUARTERLY· RAPPORT TRIMES I RIEL DE SANITAIRES MONDIALES I 2 THE CONSEQUENCES OF DISEASE AND THEIR MEASUREMENT LES CONSEQUENCES DE LA MALADIE ET LEUR MESURE Vol. 42, No. 3, 1989 World Health Organization Organisation mondiale de la Sante Geneve The World Health OJia,lization is a specialized agency of the United Nations with pri- mary responsibility for international health matters and public health. Through this organi- zation, which was created in 1948, the health professionals of some 160 countries exchange their knowledge and experience with the aim of making possible the attainment by all citizens of the world by the year 2000ofa level of health that will permit them to lead a socially and economically productive life. By means of direct technical cooperation with its Member States, and by stimulating such cooperation among them, WHO promotes the development of comprehensive health ser- vices, the prevention and control of diseases, the improvement of environmental conditions, the development of health manpower, the coordination and development of biomedical and health services research, and the planning and implementation of health programmes. These broad fields of endeavour encompass a wide variety ofactivities, such as developing systems of primary health care that reach the whole population of Member countries; pro- moting the health of mothers and children; combating malnutrition; controlling malaria and other communicable diseases including tuberculosis and leprosy; having achieved the era- dication of smallpox, promoting mass immunization against a number of other preventable diseases; improving mental health; providing safe water supplies; and training health per- sonnel of all categories. Progress towards better health throughout the world also demands international cooper- ation in such matters as establishing international standards for biological substances, pes- ticides and pharmaceuticals; formulating environmental health criteria; recommending international nonproprietary names for drugs; administering the International Health Regu- lations; revising the International Classification of Diseases, Injuries, and Causes of Death; and collecting and disseminating health statistical information. Further information on many aspects ofWHO's work is presented in the Organization's publications. The World Health Statisti<·s Quarterly replaces (since 1978) the monthly World Health Statistics Report (published since 1967) and its forerunner the Epidemiological and Vital Statistics Report (published since 194 7). It deals with the detailed analysis of selected health topics of current interest. Starting with Vol. 41 ( 1988), the Quarterl_vcontains articles in either French or English with a summary in both languages. Annual subscription Sw. fr. 85.- Price per copy Sw. fr. 23.- Material from the Quarterly may be reproduced providing due acknowledgement is made. L'Organisation mondiale de la Sante (OMS), creee en 1948, est une institution specialisee des Nations Unies a qui incombe, sur le plan international, la responsabilitC principale en matierede questions sanitairesetde sante publique. Au sein de l'OMS, les professionnels de la sante de quelque 160 pays echangent des connaissances et des donnees d'experience en vue de faire acceder d'ici l'an 2000 tous les habitants du monde a un niveau de sante qui leur permette de mener une vie socialement et Cconomiquement productive. Grice a la cooperation technique qu'elle pratique avec ses Etats Membres ou qu'elle stimule entre eux, !'OMS s'emploie a promouvoir la misc sur pied de services de sante complets, la prevention et rendiguement des maladies, l'amelioration de l'environnement, le developpement des personnels de sante, la coordination et le progres de la recherche bio- medicale et de la recherche sur les services de santC, ainsi que la planification et l'ex&ution des programmes de sante. Le vaste domaine oll s'exerce raction de l'OMS comporte des activitCs trCs diverses: developpement des soins de sante primaires pour que toutes les populations puissent y avoir acct:s; promotion de la santC matemelle et infantile; la lutte contre la malnutrition; lutte contre le paludisme et d'autres maladies transmissibles, dont la tuberculose et la lepre; l'Cradication de la variole Ctant reatisee, promotion de la vaccination de masse contre un certain nombre d'autres maladies Cvitables; amClioration de la sante mentale; approvision- nement en eau saine; formation de personnels de santC de toutes categories. II est d'autres secteurs encore oU une cooperation intemationale s'impose pour assurer un meilleur etat de sante a travers le monde et !'OMS collabore notamment aux tiches sui- vantes: Ctablissementd'Ctalons intemationaux pour les produits biologiques, les pesticides et les prCparations pharmaceutiques; formulation de critCres de salubritC de l'environnement; recommandations relatives aux denominations communes intemationales pour les subs- tances pharmaceutiques; application du Ri:glement sanitaire international; revision de la Oassification intemationale des maladies, traumatismes et causes de dCCCs; rassemblement et diffusion d'informations statistiques sur la santC. On trouvera dans les publications de !'OMS de plus amples renseignements sur de nom- breux aspects des travaux de !'Organisation. Le Rapport trimestriel de statistiques sanitaires mondiales remplace (depuis 1978) le Rapport de statistiques sanitaires mondiales (publie depuis 1967) et son precurseur le Rapport epidemiologiqueet demograph1que(publie depuis 194 7). II presente des analyses detaillees sur des sujets specifiques d'interet courant. A compter du Vol. 41 ( 1988), le Trimesmel presente des anicles originaux en frant;ais ou en anglais, accompagnCs d'un resume dans les deux langues. Prix de l'abonnement annuel .............. . Fr. s. 85,- Le numero ................ . Fr. s. 23,- La reproduction d'extraits du Trimestriel est autorisee, sous reserve d'indication de la source. IX ISSN 0043 - 8510 PRINTED IN SWITZERLAND 89 / 8076 - Atar SA. Geneva - 4 700 Cover design: Gilbert Auberson * T M F N Symbols used in tables Preliminary, approximate or estimated data. Data not available. Nil or magnitude negligible. Category not applicable. Total. Male. Female. Absolute numbers. © World Health Organization 1989 The designations employed and the presentation of material in this publication do not imply the expression of any opinion whatsoever on the part of the Secretariat of the World Health Organization concerning the legal status of any country, terri- tory, city or area or of its authorities, or concerning the delim- itation of its frontiers or boundaries. The statistics which relate to the Federal Republic of Ger- many and the German Democratic Republic include the rele- vant statistics regarding Berlin for which separate data have not been supplied. This is without prejudice to any question of status which may be involved. Where the designation "country or area" appears in the headings of tables, it covers countries. territories, cities or areas. Signed articles express the opinions of the authors and do not necessarily represent the findings or policy of the World Health Organization. Couverture: Gilbert Auberson * T M F N Explication des signes Donnee preliminaire, approximative ou estimative. Donnee non disponible. Zero ou quantite negligeable. Categorie non applicable. Total. Masculin. Feminin. Nombres absolus. © Organisation mondiale de la Sante 1989 Les appellations employees dans cette publication et la pre- sentation des donnees qui y figurent n'impliquent de la part du Secretariat de l'O,ganisation mondiale de la Sante aucune prise de position quant al.I statut juridique des pays, territoires, villes ou zones, ou de leurs autorites. ni quant au trace de leurs frontieres ou limites. Les statistiques se rapportant a la Republique democratique allemande et a la Republique federale d' Allemagne compren- nent les statistiques pertinentes concernant Berlin pour lequel des donnees separees n'ont pas ete fournies. Toute question de statut demeure reservee. Lorsque !'appellation «pays ou zone» apparait dans le titre des tableaux, elle couvre les pays, territoires, villes ou zones. Les articles signes expriment les vues de leurs auteurs et ne correspondent pas necessairement aux conclusions ou a la politique adoptee par !'Organisation mondiale de la Sante. WORLD HEAL TH STATISTICS QUARTERLY RAPPORT TRIMESTRIEL DE STATISTIQUES SANITAIRES MONDIALES VOL.42,No.3,1989 THE CONSEQUENCES OF DISEASE AND THEIR MEASUREMENT: IMPAIRMENTS, DISABILITIES AND HANDICAPS CONTENTS The consequences of disease and their measurement: Page introduction (summary]. Michel C. Thuriaux . . . . . . . . . . 113 Measuring the consequences of illness. Philip H. N. Wood....................................... 115 Survey design strategies for the study of disability. Mary Chamie . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 122 Estimating disability-free life expectancy (DFLE) in the Western countries in the last decade-how can this new indicator of health status be used? (summary]. Jean-Marie Robine . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 147 The International Classification of Impairments, Disabilities, and Handicaps (ICIDH)-its use in rehabilitation. Marijke de Kleijn-de Vrankrijker, Christa Seidel & Ursula Tscherner . . . . . . . . . . . . . . . . . . . . . . . . 151 Use of the WHO classification in assessing the prevalence of diseases, impairments and handicaps in Punjab Province, Pakistan. Jane Finnstam, Gunnar Grimby & Saeeda Rashid . . . . . . . . . . . . . . . . . . . . . . . . . 157 Using the International Classification of Impairments, Disabilities, and Handicaps in surveys: the case of Spain. Pilar Gomez Rodriguez . . . . . . . . . . . . . . . . . . . . . . . . . . 161 Measuring handicap in the community: a micro-survey in a French village (summary]. Pierre Minaire, Jean Cherpin, Jean-Louis Flores & Didier Weber........................................ 175 Planning services together with disabled people: the importance of a common language. Victor Finkelstein . . 177 Corrigendum, Vol. 42, No. 1, 1989 . . . . . . . . . . . . . . . . . . 180 LES CONSEQUENCES DE LA MALADIE ET LEUR MESURE: DEFICIENCES, INCAPACITIES, DESAVANTAGES SOM MAIRE Les consequences de la maladie et leur mesure: introduction. Michel C. Thuriaux .................. . Mesure des consequences des maladies (resume]. Philip H. N. Wood .............................. . Methodes d'enquete sur l'incapacite (resume]. Mary Chamie ...................................... . Estimation de la valeur de l'esperance de vie sans incapacite (EVSI) pour les pays occidentaux au cours de la derniere decennie - quelle peut etre l'utilite de ce nouvel indicateur de l'etat de sante? Jean-Marie Robine. Classification internationale des handicaps: deficiences, incapacites et desavantages (CIH) - son utilisation aux fins de la readaptation (resume]. Marijke de Kleijn-de Vrankrijker, Christa Seidel & Ursula Tscherner ........ . (Utilisation de la classification de l'OMS pour estimer la prevalence des maladies, deficiences et desavantages dans la Province du Pendjab, Pakistani (anglais seulement]. Jane Finnstam, Gunnar Grimby & Saeeda Rashid ....................................... . Utilisation de la Classification internationale des handicaps pour les enquetes: l'exemple de l'Espagne (resume]. Pilar Gomez Rodriguez ................. . La mesure du handicap dans la communaute: une micro-enquete dans un village franc,ais. Pierre Minaire, Jean Cherpin, Jean-Louis Flores & Didier Weber ...... . La planification des services en collaboration avec les personnes atteintes d'incapacites: !'importance d'un langage commun (resume]. Victor Finkelstein ........ . Rectificatif, Vol. 42, N° 1, 1989 .................... . Pages 110 120 138 141 155 157 166 167 179 180 - 110 - LES CONSEQUENCES DE LA MALADIE ET LEUR MESURE: INTRODUCTION Michel C. Thuriaux8 On estime generalement que 7-10% de la population mondiale souffre de consequences chroniques de la maladie, consequences qui se repercutent negative- ment sur leur adaptation a la vie de chaque jour. Si la situation dans les pays riches correspond peut- etre plus a l'image traditionnelle des infirmites liees a l'age dans une population vieillissante, et si les pays «pauvres et jeunes)) presentent une predomi- nance d'infirmites consecutives aux maladies infec- tieuses, aux problemes de la petite enfance et a la malnutrition, ces distinctions ne sont ni absolues ni permanentes: le probleme des consequences chroni- ques de la maladie se pose et se posera avec une acuite croissante a tous les pays, dans leurs politi- ques et leurs programmes de prevention ou de rehabilitation. L'identification et la quantification de ces consequences sont done essentielles pour !'esti- mation et la projection des coGts financiers et hu- mains qu'elles peuvent entrainer. Dans les pays et zones ou les causes de deces sont enregistrees de fac;:on adequate (environ un tiers de la population mondiale), les statistiques de mortalite, phenomene unique et sans equivoque, permettent l'etude d'une serie d'indicateurs, ainsi que la deriva- tion d'indicateurs de mortalite prematuree «evi- tablell, plus sensibles que les indices de mortalite traditionnels ( 1). A des degres divers, les recents efforts d'evaluation des progres vers la sante pour tous (2) ont fait appel a ces indicateurs derives de mortalite. Les statistiques de morbidite, initialement limitees a la pathologie infectieuse et aigue (maladies quaran- tenaires, maladies evitables par la vaccination, par exemple), sont souvent incompletes du fait d'un sous-enregistrement, probleme qui a entre autres entraine l'arret de la publication systematique de donnees de morbidite dans I' Annuaire de statisti- ques sanitaires mondiales depuis 1985. En ce qui concerne la pathologie non aigue (generalement non infectieuse), la collecte de donnees d'incidence est plus recente; tres souvent, les donnees sont recueil- lies par des systemes de registre et presentent des difficultes d'interpretation liees a la definition meme de ce qu'est un cas (par exemple un cas de maladie cardio-vasculaire ou de cancer). Pour les indicateurs de morbidite en general, !'interpretation des tendan- ces est de surcroit compliquee par le fait que les valeurs observees sont affectees non seulement par !'evolution des maladies dans le temps mais aussi par !'evolution des services de sante (amelioration de la couverture sanitaire et des techniques de de- pistage et d'enregistrement). • Epidemiologiste, Division de la surveillance epidemiologique et appreciation de la situation sanitaire et de ses tendances, Develop- pement des services d'epidemiologie et de statistiques sanitaires, Organisation mondiale de la Sante, Geneve. bOrganisation mondiale de la Sante. Recueil des resolutions et decisions de l'Assemblee mondiale de la Sante et du Conseil executif- Volume II, 1973-1984. Geneve, OMS, 1985. Tous ces indicateurs statistiques consideres plus haut ont en commun de mesurer des incidences, c'est-a-dire le passage d'un etat a un autre, et done une modification quantitative limitee dans le temps. Ces mesures, si elles presentent souvent des difficul- tes d'ordre technique (c'est le cas par exemple des maladies non infectieuses) ne presentent guere de difficultes majeures d'ordre conceptueL Au cours de ses revisions successives, la Classification internatio- nale des maladies (CIM) a pu developper un cadre dans lequel les causes de changements d'etat (telles que les causes de mortalite et les causes d'incidence de maladie) ont, dans !'ensemble, pu etre inte- grees (3), II en va differemment lorsqu'il s'agit de considerer et de mesurer celles des consequences de la maladie qui evoluent au cours d'une periode plus ou mains longue, comme c'est le cas des deficiences, incapaci- tes et handicaps, Le vieillissement de la population et le developpement des moyens de lutte contre la morbidite aigue ont pour corollaire un accroisse- ment relatif de la pathologie chronique et de ses consequences (maladies du vieillissement, sequelles d'accidents, pathologie psychiatrique de longue duree, sujets survivant avec une anomalie ou une malformation congenitale); la planification et !'eva- luation des programmes de sante doivent, de fac;:on croissante, tenir compte de cette pathologie. Les premieres enquetes systematiques sur l'invalidite consecutive a la maladie remontent a la fin du siecle dernier (M. Chamie, communication personnelle, 1989); les classifications et les mesures de l'invalidite ont ete tout d'abord basees, comme pour la mortali- te et la morbidite, sur des axes etiologiques. Une premiere evolution a consiste a faire appel a !'eva- luation de la capacite de l'individu a se prendre en charge dans les activites de la vie quotidienne (4), Cette approche a l'avantage d'etre basee sur la fonction plutot que sur l'etiologie de la lesion ou des lesions originelles, mais, au-dela d'un certain niveau de complexite, elle presente !'inconvenient d'etre marquee par le contexte culture!, ce qui peut rendre difficiles les comparaisons entre pays. Dans le cadre general de la famille des classifica- · tions proposees par l'OMS, les premiers essais de rubriques supplementaires («code Yll) des Sixieme et Septieme revisions de la CIM (1948 et 1955) ne furent que rarement mis en application; la Confe- rence internationale pour la Huitieme revision (5) considera que ces rubriques constituent une classifi- cation parallele a «usage facultatif». Par la suite, les travaux de Cahana en Israel, entre autres, et ceux de Wood a la demande de l'OMS aboutirent, en 1976, a la version actuelle et a la resolution WHA29.35b de l'Assemblee mondiale de la Sante, approuvant la publication, a titre d'essai, de la Classification inter- nationale des deficiences, incapacites et handicaps, sous forme de supplement a la Neuvieme revision de la CIM (mais non comme partie integrante de cette revision), Le compte rendu des discussions de Rapp. trimest. statist. sanit. mond., 42 ( 1989) - 111 - l'Assemblee a cette occasionc ne signale aucune discussion de la classification elle-meme. Woodd decrit !'evolution et les bases conceptuelles de cette classification (6), actuellement traduite ou en cours de traduction dans de nombreuses langues (allemand, chinois, croate, espagnol, franQais, italien, japonais, neerlandais, portugais, russe, serbe). L'ap- plicabilite de la Classification internationale des han- dicaps (CIH) a ete etudiee surtout dans les pays developpes (quelques essais d'application, surtout en milieu institutionnel, ant ete enregistres en Ame- rique latine (7-9)). Les concepts de la CIH prennent une importance croissante dans la legislation et dans !'evolution des politiques concernant l'invalidite (par exemple aux Pays-Bas, en Republique federale d'Allemagne et au Quebec). Les principaux domai- nes d'application de la classification et de la mesure des consequences a long terme de la maladie sont !'organisation et !'evaluation des soins de sante, !'application aux prestations de securite sociale, la recolte et !'analyse de donnees d'enquete fiables et utilisables dans la communaute. De Kleijn-De Vrankrijker et al.e ant recense les tra- vaux du domaine de !'organisation et de !'evaluation des soins de sante, en particulier les soins de rehabi- litation. II convient d'y ajouter l'etude des techniques plus specialement reservees a l'etude des personnes agees, decrites en detail recemment par Fillen- baum (10). Cet auteur inclut peu d'applications relati- ves a la CIH, considerant a l'epoque (1984) que celle-ci n'etait pas encore operationnelle dans le domaine geriatrique (la plupart des references dans ce dernier domaine sont de fait posterieures a 1984). En ce qui concerne !'application aux prestations de securite sociale, y compris la reinsertion profession- nelle,0 les travaux de Hunfeld aux Pays-Bas et ceux de Jochheim et al. en Republique federale d'Allema- gne ant souligne ce que les classifications purement medicales ant d'insuffisant pour definir l'adequation d'un paste de travail aux capacites d'une personne presentant une incapacite ou un desavantage. Dans le programme presente par Jochheim (11), l'accent est mis sur les capacites de l'individu, plut6t que sur ses incapacites, et sur les amenagements qui peu- vent etre apportes aux exigences du paste de travail en fonction de ces capacites. La nomenclature offi- cielle des deficiences, incapacites, desavantages, eta- blie en France par l'arrete du 4 mai 1988/ est basee sur la CIH, avec quelques modifications: les troubles de !'orientation figurent uniquement dans les incapa- cites (la CIH les decrit et dans les incapacites et dans c Organisation mondiale de la Santti. Actes officiels N° 234, 1976. (pp. 537-542; 633-638). d Mesure des consequences des maladies, p. 115. • Classification internationale des handicaps: deficiences, incapa- cites et desavantages - son utilisation aux fins de la readaptation, p. 151. I Ministere des affaires sociales et de l'emploi/Ministere charge de la sante et de la famille. Nomenclature des deficiences, incapacites, desavantages. Paris, 4 mai 1988. (Fascicule special N° 88/13bis). g Methodes d'enquete sur l'incapacite, p. 122. h Colvez, A. & Labbe, M. Inventory on the indicators of conse- quences of chronic diseases used in EEC countries. Paris, lnstitut national de la sante et de la recherche medicale, 1987. (Document roneotype). i Utilisation de la Classification internationale des handicaps pour les enquetes: l'exemple de l'Espagne, p. 161. i Utilisation de la classification de /'OMS pour estimer Ja preva- lence des maladies, deficiences et desavantages dans Ja Province du Pendjab, Pakistan, p. 157. k Estimation de la valeur de /'esperance de vie sans incapacite (EVSI) pour les pays occidentaux au cours de Ja derniere decennie - quelle peut etre /'utilite de ce nouvel indicateur de /'etat de sante?, p. 141. Rapp. trimest. statist. sanit. mond., 42 (1989) les desavantages), le chapitre des desavantages rela- tifs aux occupations est scinde en trois (travail, scolarite, occupations sans precision). La base de donnees du Bureau statistique des Na- tions Unies decrite par Chamie,9 base qui integre les concepts et definitions de la CIH, illustre !'impor- tance accordee tant dans les pays developpes que dans les pays en developpement a la recolte et a !'analyse de donnees d'enquetes de population fia- bles et utilisables sur le phenomene d'invalidite, tant a cause de la somme de souffrances qu'il represente que des investissements que requiert la mitigation de ces dernieres. Le Conseil de l'Europe a encourage l'etude et !'application de la CIH. Dans les pays de !'Organisation de cooperation et de developpement economiques (OCDE), une serie d'indicateurs deve- loppes a la fin des annees 70 s'est adressee aux incapacites, mais ii semble que cet effort, inscrit dans un programme plus general de developpement d'indicateurs sociaux (12), n'ait pas ete poursuivi. Colvez & Labbeh ant recense une serie d'instruments utilises dans les pays de la Communaute economi- que europeenne pour la mesure des consequences de la maladie, dans !'intention de permettre !'elabo- ration d'indicateurs de planification. lls concluent que, dans !'ensemble, ces instruments presentent les insuffisances suivantes: - ils ne prennent generalement pas en compte les enfants; - ils tendent a etre concentres sur les incapacites et handicaps lies a l'age; - !'application pratique et administrative des obser- vations resultant des mesures observees reste maigre. Au niveau national, on pourra mentionner les enque- tes effectuees recemment en Espagne,i au Royaume- Uni, en Chine et en Australie, parmi bien d'autres, sans qu'elles fassent necessairement appel aux stra- tes de classification ni meme aux concepts de la CIH. Dans ce meme domaine des enquetes et de la planification sanitaire, Chamie9 met en evidence les difficultes rencontrees dans ces enumerations. Dans les pays en developpement en particulier, les enque- tes tendent a etre localisees au sporadiques, et !'insertion dans un document d'enquete a domicile de questions sur les deficiences, les incapacites et les desavantages pose des problemes qui ne sont evoques que brievement dans le texte de Finnstam.i De la meme faQon que les donnees systematiques de mortalite ant permis !'elaboration d'indicateurs du type «annees de vie potentielle perdues)), la collecte reguliere et systematique de donnees sur les consequences de la maladie devra permettre d'eta- blir, au niveau macro-statistique, des indicateurs se- condaires du type «esperance de vie sans incapaci- te)) (EVSI). Ce type d'indicateursk represente une mesure de la longevite qualifiee par un complement d'information relatif a la qualite de cette longevite. L'application et !'adaptation de ces indicateurs, jus- qu'ici limitees a quelques pays developpes, de- vraient permettre, mieux que les indicateurs demo- graphiques traditionnels, d'illustrer !'importance de l'incapacite et de la qualite de survie. Une des priorites dans ce domaine sera de faciliter l'applica- bilite des methodes de calcul de l'EVSI dans les pays en developpement, compte tenu des limitations dans la collecte et !'analyse d'informations que connais- sent ces derniers. Au niveau meme des communautes, et dans le domaine specifique des desavantages, la classifica- - 112 - tion des consequences de la maladie devra permet- tre !'elaboration d'une mesure effective sur place des difficultes rencontrees par la population et des solu- tions qui peuvent etre apportees a ces difficultes dans le contexte local et quotidian. Minaire et al. 1 illustrent ce type d'approche, dont !'extension de- vrait faciliter la prise en mains locale de nombreux problemes de desavantages lies aux incapacites et deficiences. Evolution possible La CIH a deja fait couler beaucoup d'encre, et la bibliographie etablie par le centre collaborateur de l'OMS etabli aux Pays-Basm compte deja plusieurs centaines de references. Toute classification doit re- gulierement etre mise a jour; 10 ans apres sa pre- miere publication (1980), la CIH ne fait pas exception a la regle (13). Si les definitions des deficiences sont generalement bien acceptees, ii n'en est pas neces- sairement de meme pour les incapacites, terme que certains suggerent de remplacer par celui de capaci- tes fonctionnelles. Differents groupes, et particuliere- ment les groupes representant les handicapes physi- ques, ant propose que l'on modifie la definition du desavantage en insistant plus sur les effets de l'envi- ronnement." Le desavantage resulte d'apres eux de I La mesure du handicap dans la communaute: une micro-enquete dans un village fran9ais, p. 167. m Bibliography on IC/OH. Preparee par le Centre collaborateur OMS aux Pays-Bas (WHO Collaborating Centre for the ICIDH, P.O. Box 7100, 2701 AC Zoetermeer, The Netherlands). n La planification des services en collaboration avec les personnes atteintes d'incapacite: /'importance d'un langage commun, p. 177. facteurs d'environnement qui affectent surtout les personnes atteintes d'incapacites; puisqu'il faudrait, pour remedier a cette situation, modifier l'environne- ment, la classification devrait reposer plus sur des facteurs lies a l'environnement et mains sur des facteurs lies a l'individu. Cet argument remet bien evidemment · en question les concepts et classifications des desavantages, et, dans une certaine mesure, ceux des incapacites. L'Office des personnes handicapees du Quebec (OPHO) a pour tache de coordonner la planification en faveur des personnes presentant une incapacite ou un desavantage. En ce qui concerne le handicap ou desavantage, un courant de reflexion de l'OPHO a repris les propositions citees plus haut et souligne !'importance de connaitre a la fois les exigences de la situation et les aptitudes fonctionnelles de la personne. Le handicap est ainsi vu comme le resul- tat d'un processus interactif entre organes (deficien- ces), fonctions ou capacites (incapacites) corporelles, et les exigences qu'impliquent: les habitudes de vie (activites quotidiennes et roles sociaux) pour lesquelles l'OPHO presente un nombre de categories considerablement accru (Encadre 1 }; ·,·environnement physique et social au sens large (Encadre 2). Ces propositions, de nature essentiellement concep- tuelle, affectent la classification des handicaps/ de- savantages ainsi que celle des incapacites, et, a un degre moindre, celle des deficiences, et sont citees ici a titre d'information; elles sont loin de faire l'unanimite, comme l'indiquent par example les Encadre 1. Propositions de nomenclature: habitudes de vie Communaute Consommation de biens et services gouvernementaux Consommation de biens et services non gouvernementaux Participation a des associations volontaires Groupes religieux Education Prescolaire Scola ire Professionnelle Autre Travail Orientation Recherche d'emploi Emploi Occupations compensatrices (occupation principale non remuneree) Loisirs Sports Jeux Arts Habitudes culturelles, loisirs scientifiques Autres Nutrition Alimentation Preparation des aliments Re pas Soins personnels Hygiene Hygiene de !'excretion Habillement Soins de sante Condition physique Communication Expression d'information Reception d'information Habitation Domicile Entretien du manage Equipement Dep/acements Deplacements restraints Transports Responsabilites Financieres Civiles Relations de parente Affectivite parentale Soins conjugaux Autres relations parentales Relations conjugates Sexuelles Affectives Autres Autres relations interpersonnelles Relations sexuelles (autres que conjugales) Relations affectives (autres que conjugales) Autres relations sociales Rapp. trimest. statist. sanit. mond., 42 (1989) - 113 - Encadre 2. Proposition de nomenclature: facteurs environnementaux FACTEURS ECOLOGIQUES Nature Geographie Climat Temps Amenagement Architecture Amenagement du territoire Developpement technique commentaires de Woodd et l'examen des alternati- ves plus directement operationnelles presentees par Chamie,9 laquelle souligne que le concept de handi- cap/desavantage est un outil d'analyse plutot qu'un schema classificatoire. La revision de la CIH devra faire l'objet de discussions approfondies par tous ses utilisateurs, et Finkelstein" nous apporte, a la suite des articles decrivant les methodes elles- memes, leur developpement et quelques-unes de FACTEURS SOCIAUX Services Gouvernementaux Communautaires Prives Regles sociales Droits Valeurs et attitudes Ressources Financements et subventions Revenus personnels leurs applications effectives ou potentielles, le re- gard des premiers interesses: les personnes presen- tant une deficience, une incapacite ou un desavan- tage. Sa contribution devrait nous permettre de mieux reflechir aux finalites ethiques et sociales des classifications et aux changements que doit subir notre perception des consequences chroniques de la maladie et des reponses qu'il est possible de fournir aux problemes qu'elles posent. SUMMARY The consequences of disease and their measurement: introduction The measurement of the long-term consequences of disease, which are said to affect 7-10% of the world population in both developing and developed areas, presents both technical and conceptual problems. The development of classification schemes, foremost among which is the International Classification of Impairments, Disabilities, and Handicaps (ICIDH), has considerably changed our perception of these con- sequences, and has influenced the areas of rehabili- tation, social insurance and legislation, disability sur- veys and health planning. More indirect applications have been the use of classifications in identifying, at local level, disadvantages in everyday life and ways to mitigate these disadvantages; at the macro- planning level, the concept of disability-free life ex- pectancy is gaining increasing recognition. There is an increasing call for revising and updating ICIDH, particularly in the area of handicap, where societal and environmental factprs have to be more explicitly taken into account. The operationalization of proposed modifications will require considerable thought and discussion in which persons with dis- abilities and their representatives will have an im- portant role to play. REFERENCES- REFERENCES 1. Preventable mortality. World health statistics quarterly, 42: 1-56 (1989). La mortalite evitable. Rapport trimestriel de sta- tistiques sanitaires mondiales, 42: 1-56 (1989). 2. WORLD HEALTH ORGANIZATION. Evaluation of the strategy for health for all by the year 2000-Seventh report on the world health situ- ation. (7 volumes, various publishers, places and dates). ORGANISATION MONDIALE DE LA SANTE. Evaluation de la strategie de la sante pour tous d'ici /'an 2000 - Septieme rapport sur Ja situation sanitaire dans le monde. (7 volumes, divers editeurs, lieux et dates). Rapp. trimest. statist. sanit. mond., 42 (1989) 3. WORLD HEALTH ORGANIZATION. Manual of the inter- national statistical classification of diseases, in- juries and causes of death. Ninth Revision. Geneva, WHO, 1977. ORGANISATION MONDIALE DE LA SANTE. Manuel de Ja classification statistique internationale des mala- dies, traumatismes et causes de deces. Neu- vieme revision. Geneve, OMS, 1977. 4. CONTRIBUTION D'UN GROUPE DE TRAVAIL DE L'OCDE. Evaluation de l'incapacite par des criteres uti- lisables sur le plan international. Revue d'epidemiologie et de sante publique, 29 (4): 410-475 (1981). - 114 - 5. WORLD HEALTH ORGANIZATION. Manual of the inter- national statistical classification of diseases, in- juries and causes of death. Eighth Revision. Geneva, WHO, 1967. (Vol. I, p. xxii). ORGANISATION MONDIALE DE LA SANTE. Manuel de Ja classification statistique internationale des mala- dies, traumatismes et causes de deces. Geneve, OMS, 1968. (Vol. I, p. xxiv). 6. WORLD HEALTH ORGANIZATION. International Classi- fication of Impairments, Disabilities and Hand- icaps-a manual of classification relating to the consequences of disease. Geneva, WHO, 1980. ORGANISATION MONDIALE DE LA SANTE. Classification internationale des handicaps: deficiences, inca- pacites et desavantages - un manuel de classifi- cation des consequences des maladies. Paris, CTNERHI-INSERM, 1988. 7. LEBLAN-ESPIZONA, T. M. [Rehabilitation in primary care: feasibility index]. Havana, Ministry of Public Health, Rehabilitation Hospital Julio Diaz, 1983. (In Spanish). LEBLAN-ESPINOZA, T. M. [La rehabilitation dans Jes soins primaires: index de faisabilite]. La Havane, Ministere de la sante publique, Hopital de reha- bilitation Julio Diaz, 1983. (En espagnol). 8. DEPARTMENT OF MEDICAL REHABILITATION. [The new international classification of impairments, dis- abilities and handicaps]. Caracas, Ministry of Health and Social Welfare, 1985. (In Spanish). DEPARTEMENT DE LA REHABILITATION MEDICALE. [La nou- velle classification internationale des deficiences, incapacites et desavantages]. Caracas, Ministere de la sante et de !'assistance sociale, 1985. (En espagnol). 9. ALEXIS VERGA, M. [Use and applications of the international classification of impairments, dis- abilities and handicaps (WHO)]. Caracas, Mini- stry of Health and Social Welfare, 1987. (In Span- ish). ALEXIS VERGA, M. [Utilisation et application de Ja classification internationale des deficiences, in- capacites et desavantages (OMS)]. Caracas, Ministere de la sante et de !'assistance sociale, 1987. (En espagnol). 10. FILLENBAUM, G. G. The wellbeing of the el- derly-approaches to multidimensional assess- ment. Geneva, World Health Organization, 1984. (Offset publication No. 84). FILLENBAUM, G. G. Troisieme age et bien-etre - approches d'une evaluation multidimen- sionnelle. Geneve, Organisation mondiale de la Sante, 1986. (Publication offset N° 84). 11. JocHHEIM, K. A. [Questionnaire for the classifica- tion of disabilities) and [Questionnaire for the classification of impairments). In: ERTOMIS (ed.), [Abilities and requirements profiles-assistance in the integration of the disabled]. Heidelberg, Gemeinmi.itzige Stiftung ERTOMIS Bildungs- und Forderungs-GmbH, 1981. (In German). JocHHEIM, K. A. [Questionnaire pour la classifica- tion des incapacites] et [Questionnaire pour la classification des deficiences). In: ERTOMIS (ed.), [Profils de capacites et d'exigences - aide a /'insertion des handicapes]. Heidelberg, Ge- meinmi.itzige Stiftung ERTOMIS Bildungs- und Forderungs-GmbH, 1981. (En allemand). 12. JAZAIRI, N. T. Differentes approches pour /'elaboration d'indicateurs de sante. Paris, Or- ganisation de cooperation et de developpement economiques, 1976. 13. SODER, M. (ed.). Impairment, disability and hand- icap. Report from a workshop on the WHO terminology and manual for classification of impairments, disabilities and handicaps, Stockholm, 1 October 1984. Stockholm, Swedish Council for Planning and Coordination of Re- search, 1988. Rapp. trimest. statist. sanit. mond., 42 (1989) - 115 - MEASURING THE CONSEQUENCES OF ILLNESS Philip H. N. Wooda This article will concentrate on the International Classification of Impairments, Disabilities, and Hand- icaps (ICIDH) (1) as a means for measuring the im- pact of illness and its consequences. The ICIDH, for which I was largely responsible, was published in 1980. Looking back, it now feels as if this was the lighting of a very slow fuse. At first the ICIDH seemed to attract very little interest, but now there are encouraging indications that it is being used in different applications more and more widely. Slow uptake has been due to a variety of difficulties, some of which this article will examine. First, though, it is necessary to describe how the classification came into being. Background The earliest efforts seeking standardization for the recording and analysis of health-related information were confined to cause-of-death statistics. Even in 1856, however, Farr recognized that it was desirable "to extend the same system of nomenclature to diseases which, though not fatal, cause disability in the population" (2). The main thrust of international cooperation was the development of the Inter- national Classification of Diseases (ICD) (3), and in response to Farr's aspirations efforts were made to integrate mortality and morbidity into a single classi- fication scheme-an aim that was finally realized only in the Sixth Revision of the ICD in 1948. In the introduction to this Revision, in reviewing its application to causes of illness and disability, it was noted that "an illness varies from a minor deviation from normal health, which does not interfere with the performance of regular duties, to the chronic case which calls for bedside or custodial care for an indefinite period". Here, 40 years ago, were the forerunners of definitions of health experience in terms similar to those used in exploration of re- levant concepts in the introduction to the ICIDH. At the same time that morbidity was assimilated fully into the ICD, the need was also felt to extend the scheme with supplementary classifications of impairments, blindness, and deafness, which formed part of the Y code. This code was reproduced unal- tered in the Seventh Revision of the ICD in 1955, but for the Eighth Revision (1965) the supplementary classification was restructured. On this occasion the Revision Conference noted that "the classification of impairments in categories Y40-88 was seen as a parallel code, collecting in one group a number of conditions scattered throughout the main code. It had been used by some countries in health surveys and the Conference, appreciating that such surveys • Emeritus Director, Arthritis and Rheumatism Council Epidemio- logy Research Unit, and Honorary Professor of Community Medi- cine, University of Manchester, United Kingdom; Consultant to the World Health Organization, Geneva, for the development of the ICIDH. Wld hlth ststist. quart., 42 ( 1989) were likely to increase, considered that it would be useful if such a classification appeared in the Manual of the ICD for optional use" So by 1965 the principle of a separate but parallel code was accepted. Unfortunately in the process of editing the Eighth Revision for publication the op- tional classification of impairments was inadvert- ently omitted. The Revision Conference had certainly been prescient when it anticipated that surveys of impairments were likely to increase. Changes in the burden of disease were becoming more evident, with chronic and disabling conditions assuming a dominant position in many parts of the world. Omis- sion of the Y code and consequent lack of a system to cope with data on these aspects thus emerged as a serious limitation, and there was increasing de- mand for an appropriate classification scheme to be developed in conjunction with the Ninth Revision of the ICD. Herein lay the immediate pedigree of the ICIDH, but certain aspects command further examin- ation. General considerations After mortality the most burdensome consequence of illness is disablement. Implicit in the deliberations on health-related information was an assump- tion-that !CD-derived data, with their orientation towards the underlying causes of medical conditions or diseases, were not adequate for revealing the nature and scale of disablement in such a way as to illuminate policy development and promote im- proved services for those with disabilities. How justi- fiable was this assumption? More than 10 years ago WHO estimated that in excess of 450 million people throughout the world were disabled, representing a prevalence ratio of 1 in 10. Fig. 1 shows the world burden of disability, based on WHO's estimates of the proportions ac- counted for by various of the major causes. As reported previously (4), I found it useful to inflict my own taxonomy on these data by dividing the whole into three groups-developmental, acute, and chronic. This is more helpful when considering the potential for prevention and control. Some 64% of the total is accounted for by developmental and acute problems, a large part of which could be prevented by the application of conventional public health insights. This conclusion is reinforced when it is recalled that one-third of those affected are children, and that four-fifths of the disabled live in developing countries. Much the biggest challenge on a global scale, therefore, is to find out why possible action is not taken, and standard ICD data serve this function fairly well. The remainder of the burden is made up of chronic problems, which are less straightforward. The very designation "chronic" reflects that at present such - 116 - FIG. 1 MAIN CAUSES OF DISABILITY IN THE WORLD PRINCIPALES CAUSES D'INCAPACITES DANS LE MONDE Developmenta I Developpementales WHO 89652 conditions cannot readily be arrested, and in the main they are not amenable to simple measures for primary control or prevention. This has two impli- cations. Firstly, models of causality tend to be com- plex, invoking the interplay of multiple factors; it is because no one factor appears to be dominant in its effect that primary control measures are generally difficult to identify. Secondly, extended time scales mean that diagnosis, whilst still important, tends to be overshadowed by the existential problems of sustaining everyday life in an acceptable manner. In turn this means that the concept of disease accounts for an insufficient part of the variance in health status, so that !CD-derived data have only a limited power for revealing the nature and scope of the challenge. Herein lay the basis for concluding that !CD-derived data were not adequate to the problem. That said, and pending wider availability of ICIDH- based data, the value of rearranging ICD categories according to their disabling potential rather than the nature of the underlying morbid anatomical pro- cesses should not be neglected (5). What gave further stimulus to development of a scheme for organizing data complementary to the approach adopted in the ICD has been broader alterations in society as a whole. It is in the domain of chronic illness, especially, which in this context includes conditions present at birth or resulting from accident or injury, that the nature of challenges confronting medical practitioners, scientific invest- igators, health service administrators and policy makers has been undergoing profound change. This has come about for five main reasons: (i) extension of health service provisions to increasing pro- portions of the population; (ii) escalating costs for such provisions; (iii) demographic shift towards older people; (iv) a concomitant alteration in the morbidity burden; and (v) emerging social and politi- Chronic Chroniques Acute Aigues cal awareness of disadvantage in society. Although it was largely in response to these that requests for something like the ICIDH began to be expressed, changes in the nature of illness experiences have themselves contributed to increased demand on health services, so that it is necessary to take ac- count of problems of scale as well. The implications of the emergence of chronic illness as a major problem have posed a number of chal- lenges for medical practice; these were identified in an earlier paper (6). Such features made their own contribution to growing demand for appropriate care services. Uncertainty and ignorance about the nature and scope of the difficulties were evident, very much due to failure to study the outcomes of disease in such a detailed, scientific, and sophisticated manner as has been the case with diagnosis and etiology. However, the situation was compounded by lack of a conceptual basis for appreciating disease con- sequences, and by confusion in the terminology used in such contexts. This all served to cloud the messages transmitted to policy makers and pol- iticians, at the same time offering justification for evasion of the problems posed by disablement be- cause of unknown financial implications. Yet the need to take practical action was still pressing. Scope of the ICIDH A complex challenge therefore had to be recognized. Before proceeding further it is relevant to recapitu- late what is axiomatic in taxonomy, that the criterion of utility is paramount (7). In other words, what matters is whether the exercise accomplishes its objectives and suits the purposes for which it was designed. Although what could be regarded as a classification's face validity has some practical rele- Wld hlth statist. quart., 42 ( 1989) - 117 - vance, theoretical and ideological issues are of sec- ondary importance. Here it is important to em- phasize that, in contrast to the relatively limited scope of the ICD, in taking stock of the ICIDH a number of different planes or levels have to be considered. These correspond to different purposes or objectives when the ICIDH is used as a resource. This is not the place to undertake exposition of the conceptual framework developed, or to attempt to clarify linguistic usage; for these purposes standard sources should be consulted (1, 6, 8). However, the essence of the conceptual framework adopted is critical, and so it is reproduced here for convenience: DISEASE OR DISORDER ---; IMPAIRMENT ---; DISABILITY -----> HANDICAP. First it was necessary to establish basics, which involved a return to the fundamental dimensions of experience and an examination of relevant concepts in a taxonomic or interrelational mode of thought (9), the results of which are noted above. In many ways the problems associated with disable- ment present ambiguities that are encountered with other human predicaments, such as old age, alcohol- ism, anxiety and loneliness. The ICIDH offers a means of resolving some of the ambiguities, at least in regard to disablement. A specific practical prob- lem is that service agencies responsible for respond- ing to needs in this area are often administratively separate and influenced by different historical tradi- tions, and yet as far as chronic illness is concerned it is unrealistic to expect a correspondingly neat sepa- ration between the medical and social aspects of an individual's needs. The particular relevance of the conceptual distinctions noted above is that they correspond to the obligations of different sectors or components of overall arrangements for care. Thus impairments are primarily the concern of medical services, disabilities of rehabilitation facilities, and handicaps of social welfare provisions and broader areas of social policy, such as those concerned with education, employment, transport and housing. It is on this plane that the ICIDH almost certainly makes its most profound contribution, as a resource for enlightenment-not that this is entirely without controversy, as will be discussed later. The ICIDH helps to stimulate and illuminate thinking about the nature of disablement, and it focuses attention on issues such as indicators, quality of life and out- 'come. At this level the ideas have been welcomed by those involved with the education and training of health and related professionals, enabling them to present some coherence in thinking on what had formerly been rather arbitrary and disjointed topics. What is disappointing, though, is that the thinking does not seem to have had any great penetration at the level of policy makers, and until it is assimilated at this level many of its potential benefits will not be realized. However, when the opportunity has been grasped the ICIDH has proved to be of great help, including among groups of people who themselves have disabilities (10, 11). On a second level the detailed classification schemes for the three principal concepts serve to exemplify and expand each of those concepts. Detailed cat- egories are identified so as to facilitate structuring of data. Here is where the ICIDH most resembles the ICD, thus meeting WHO's original aspiration for a framework against which information could be or- ganized so as to illuminate the consequences of disease. Presumably rather formal statistical report- ing was what was in mind, but unfortunately nothing remotely resembling information of this Wld hlth statist. quan., 42 (1989) type seems to be generated on a fairly routine basis-so that in this regard the ICIDH is waiting for application in its primordial field. What was contro- versial was the idea of separate approaches to im- pairment, disability and handicap, the justification for which has been reviewed above. Differences between the nature of the concepts and the ex- periences to which they related dictated that dif- ferent taxonomic approaches be adopted for each dimension or concept. Such variations were rein- forced by the different professional contexts in which the schemes would be applied. The impairment code did not have any significant antecedent; it endeavoured to provide an exhaustive listing of organ or system malfunction to comple- ment the exhaustive enumeration of diseases in the ICD. The disability code adopted an approach that deliberately departed from conventional assessment of activities of daily living (ADL). The latter tend to view activities in terms of their purpose or location of execution which, though having utility in the context of application, nevertheless may obscure similarities that are relevant for classifica- tion-especially if attempts are made to study inter- relationships between, say, specific disabilities and coexistent impairment (12). The handicap classifica- tion was the most original departure and differed by being constructed in the form of ordinal scaling. Once again, pre-existent social indicators with es- tablished empirical utility were deliberately not fol- lowed, because it was thought more important to try to preserve the conceptual distinctions identified and offer a scheme which dovetailed more closely into the overall approach of the ICIDH. It was envisaged that, depending on the purpose of the application, any one of the classifications might be used on its own, either for more explicit definition of specific problems or as a tool for screening for problems in the other dimensions (i.e. others of the three con- cepts, impairment, disability and handicap). On the other hand, any two or all three of the classifications might be used in conjunction as a means for explor- ing discordances in status on different IDH dimen- sions (e.g. the way in which an individual might be severely disabled but only mildly handicapped, or mildly disabled but very severely handicapped). In other words, it should be possible to shed light on the genesis of dimensions further down the se- quence (i.e. further to the right in the interrelation- ships shown above), such as by identifying a wealth or deficiency of, for instance, family support, and to indicate what interventions or support might be needed. Other applications A third level can be identified when the two levels just discussed, of policy enlightenment and detailed specification, are taken in conjunction. This relates to establishing an agenda for appraisal (13), perhaps the second most important thing the ICIDH ac- complishes. By offering a fairly exhaustive listing of the major topics of concern in the single-digit cat- egories of the three codes, an agenda is established which can be used as a check list to see that every important domain of experience is covered. This can help to remedy the problem that existing assessment schedules, such as a matrix of ADL, tend to have been developed by particular professional groups and are limited to what such groups have seen as their professional area. Very frequently, for example, schedules are drawn up in a formal re- - 118 - habilitation facility and focus on physical capacity, while failing to indicate that mentation and be- haviour should also be assessed-these being left to professionals in those areas. Such limitations be- come especially critical when it is recalled that the largest proportion of people with disabilities live in the community and are not in regular contact with individuals from any of the professional disciplines with commitments to disability. The agenda func- tion, in contrast, serves to remind those from any background of the topic areas to be taken into account when in contact with someone with a dis- ability. For example, the customary training of com- munity nurses might not alert them to be sensitive about the full range of disabilities, intellectual, be- havioural, sensory, physical, or skill-related, and yet as the likeliest contact with someone with a dis- ability all of these dimensions ought to be assessed, at least to the extent of discovering that someone more expert in a particular dimension ought to be consulted or called in. The agenda aspect of the ICIDH has informed the design of population surveys (14). It underpinned the organization and presentation of a guide to services for physically disabled people in a metropolitan area (15); this was welcomed by both care pro- fessionals and people with disabilities. In somewhat similar fashion the agenda has been exploited as a proforma developed by the British Paediatric Associ- ation to cover each single-digit category in the ICIDH, and then used by a British health board in the preparation of basic records for a computer register of children with special needs (M. Mcculloch, per- sonal communication). The fourth level of application of the ICIDH relates to management functions. The first challenge for man- agement is to take stock and analyse problems in order to clarify their nature, so as to indicate the types of input required to overcome or mitigate the difficulties revealed. This aspect has already been discussed at the first level, concerned with policy formulation. Data are then needed which are re- levant to the policies adopted, to which the second and third levels relate. Finally, when policy has been implemented, management will then wish to eval- uate the appropriateness and effectiveness of care processes. As discussed near the beginning of the introduction to the ICIDH (1), the simplest requirement of a health care or disability-related system is that some benefi- cial change in the individual's situation or status should result from contact with the system. Whilst ICD categories can be used for evaluation of out- come with acute or curable disease, in the form of recovery or death, only ICIDH categories have a potential to reflect change after contact with the system in chronic or disabling disorders. Again, though, there is no record that anyone has used, let alone even appreciated, the role that the ICIDH could play in developing evaluation of care services. Neither, with a single exception (16), has the pos- sibility of using the disability code in a reciprocal fashion for specification of environmental demands been exploited, even though the results could be matched with an individual's disability profile; this could then facilitate screening in such contexts as job placement in vocational rehabilitation, school placement, rehousing the disabled, and identifying vulnerability in the elderly. Problems with the ICIDH The fifth level at which the ICIDH has to be consid- ered concerns its theoretical purity or appropriate- ness. Three years after the ICIDH was published a critique by a philosopher was issued (17), question- ing both the validity of the basic distinctions made and whether the components were causally related in the manner suggested. It was flattering that the ICIDH merited serious consideration by a phil- osopher, the basis for the challenge being essen- tially linguistic. However, without wishing to appear cavalier I would return to the point made earlier-the justification of a taxonomy is whether it serves its purpose, and growing use of the ICIDH despite various difficulties (not in the main related to the linguistic problems raised by the philosopher) attests to fulfilment of some, at least, of the purposes. Of greater concern has been what amounts to ideo- logical challenge. On the one hand, and perhaps the most frequently encountered, has been diffidence over straying into the domain of handicap or dis- advantage, even though this is surely the most basic aim in the endeavour. This has often been justified on the supposed grounds that appropriate assess- ment schedules or survey instruments are not pro- vided in the ICIDH, notwithstanding that this was beyond both the scope of WHO's original briefing and the resources available to undertake the neces- sary developmental field work before the manual was published. The range of information required to elicit information relevant to social enquiry has also proved daunting. So, too, has the challenge of find- ing means for distinguishing between potential dis- advantage, which the handicap code is intended to reveal, and whether this is actually experi- enced-though this is surely not too difficult. Under- lying this, though, has been the perennial tendency for health professionals to overmedicalize disable- ment experience derivative, at least in part, from the individualistic focus so common in Judaeo-Christian cultures. The latter element has been picked up by some groups of people with disabilities, who have criti- cized the ICIDH for being too individualistic. WHO wanted a scheme of classification that could be applied to data on individuals, as happens with the ICD. However, although directed at the functioning of the individual the ICIDH nevertheless does pro- vide a means for establishing the social determina- tion of disadvantage (13). On a deeper plane, though, is the danger complementary to over- medicalization, that of oversocialization (9). This per- spective often denies the relevance of the medical condition underlying disablement, neglecting the fact that this is the spring from which disability emerges and that in all instances it accounts for a significant, even if not necessarily overwhelming, proportion of the variance in status. Such ideas are often projected to what approximates to a con- spiracy view of social interaction, seeing the dis- advantage associated with disablement as the result of social oppression (18). As a result the relevance of work in the handicap area of the ICIDH is rejected. At the root of both these extremes is the failure to distinguish between tasks and roles. Tasks may be the prerequisite for a role, but they are not sufficient cause to be regarded as constitutive of the role; to that extent there is a causal relationship between the two, which answers one of the philosopher's criti- cisms (17). There is complex mediation between task and role, to which individual behaviour and attitudes Wld hlth statist. quart., 42 ( 1989) - 119 - contribute as well as resources and social op- portunities and restrictions; these points have been elaborated elsewhere (12, 19). Failure to appreciate these subtleties encouraged many to pursue their views on social oppression by seeking a consumerist platform as the remedy in a pluralist society. How- ever, anti-welfare drifts in politics in both the United States of America and the United Kingdom, for example, have exposed the vulnerability of such rhetoric; consumerist demands face a bleak future when welfare budgets are reduced. In fact the acqui- sition of data through approaches such as the ICIDH should provide ammunition for endeavours to seek better social responses to disablement, by making explicit the extent of disadvantage or handicap. However, the value of such data will be jeopardized if attempts are made which in effect amount to suborning the ICIDH through unquestioning incor- poration of the conspiracy view into its conceptual framework. The way forward Much of the progress in use of the ICIDH as a means of documenting the consequences of illness is repor- ted in other contributions to this issue, in occasional papers in International disability studies (formerly International rehabilitation medicine), and in two series of papers arising from WHO working groups; the latter are enumerated in sources already cited (9, 12). The same sources examine some of the difficulties encountered, and common mis- conceptions about the ICIDH have also been identi- fied (13). Responsibility for two problems, though, rests with WHO. Firstly, it is only recently that the Organization has done much to increase awareness of the possibilities extended by the ICIDH, to which designation of WHO collaborating centres to pro- mote work in this area has been a welcome addition. Secondly, many complain at what appears to be overlap between a number of items in the ICD and the ICIDH. Part of this relates to a difference in perspective. For example, incontinence is identified at 788.3 in the Ninth Revision of the ICD and it also features in the impairment code; this is not incom- patible with the ICD's intent to cover all medically- related conditions giving rise to morbidity or mortal- ity in a single coding system, but equally inconti- nence is obviously an impairment which has to feature in any enumeration of disease consequences. Admittedly some of the overlaps could be eliminated fairly readily, by clarifying the focus of the ICD; the V Code, to be the Z Code in ICD-10, remains at least equally problematic in this regard. Some of the apparent replication could be resolved more simply, by altering the emphasis in terminology as had been done in distinguishing between certain impairments and some of their related disabilities (ICIDH, p. 33) (1). It is unfortunate that the processes leading up to the Tenth Revision of the ICD have not con- fronted these problems more systematically, so that needless duplication and perhaps attendant ambi- guity will persist for the foreseeable future. Such considerations apart, it will probably be helpful to give an indication of how what has proved to be the most off-putting part of the ICIDH, the handicap code, can be approached. This will be done by an outline of how my colleagues and I translated the physical independence dimension of handicap for application in a community survey (20); this will be reported more fully elsewhere (21). Again, the key to the approach lay in utilizing relatively standard data Wld hlth statist. quart., 42 (19891 from enquines about activities of daily living but viewing them from the perspective of handicap so as to generate information in keeping with the com- missioning health and municipal authorities' prin- cipal concern with physical independence handicap. Much experimentation was called for in the attempt to relate various functional difficulties to the most appropriate categories on an expansion of the phys- ical independence handicap scale that we developed. The data base included pain and energy scores from the Nottingham Health Profile (22), although these were ultimately shown to contribute little useful to discrimination between categories. In the process it was found that many daily living activities were neutral as regards discrimination, and yet others functioned poorly for this purpose. At the end it was found that only 28 ADL variables, 41% of those originally considered, were necessary for assign- ment to categories on our expanded physical inde- pendence scale; i.e. a considerable reduction in the data needed was possible. The results were valida- ted by independent assessments relating to a sum- mary of dependence made by the interviewer and receipt of an attendance allowance (a social security benefit for those needing constant attendance for at least 12 hours by day or night). This exemplifies how at least this component of the handicap code can function for the purpose for which it was de- signed, to ascertain the circumstances of people to indicate the risk of experiencing disadvantage. At this juncture it is opportune to emphasize a fundamental point about information. Data tend to be regarded rather narrowly and in a particular light determined by the context and format in which they were originally· collected. However, when looked at differently the same information can in fact serve to illuminate complementary aspects of a problem. The difference in perspective is accomplished by re- structuring the data; in other words, rearranging them to bring out similarities based on char- acteristics different from those which shaped the original structure of the data. Thus, as already men- tioned, if !CD-derived data are restructured according to disabling potential rather than morbid anatomy it is possible to learn something useful about dis- ability. Similarly, data on ADL gathered specifically in the context of disability can, when viewed differ- ently, also serve to reveal the potential for dis- advantage or handicap. Up until now the ICIDH appears to have been used by only scattered and isolated individuals or groups, with the exception of participants at the WHO work- ing groups held at Voorburg (Netherlands) (referred to above). However, the basic ideas have much wider currency, having been introduced into a number of textbooks and standard reference works; this is especially evident in Northern America. Un- fortunately those who learn of the conceptual dis- tinctions from these secondary sources remain largely unaware of the manual from which they were derived, so that practical application of the classifi- cations does not proceed apace. Part of the difficulty is that WHO publications are often far from easy to obtain, there usually being only a single main sup- plier in any country and conventional booksellers being largely unaware of the publications and how to secure them. There does now seem to be growing awareness and utilization of the ICIDH, and initiation of WHO col- laborating centres will hopefully extend this process. - 120 - The publication of the official French translation of the ICIDH late in 1988 (23) seems to be a watershed event in the wider application of the classifi- cations-an appropriate landmark at the bicentenary of the French Revolution. However, the development is still really only in its infancy, because the wider implication of the ICIDH is to challenge the way in which arrangements for health care and social wel- fare are conceived at present (24), a process that has barely begun. SUMMARY The International Classification of Impairments, Dis- abilities, and Handicaps (ICIDH) was developed as a means for measuring the impact of illness and its consequences, although there was much delay be- fore the classifications became at all well known. After giving an outline of how the ICIDH came into being, this article considers the basis of different types of health problem and of the potential of the International Classification of Diseases (ICD) and the ICIDH to reveal useful information on such prob- lems. The ICIDH is based on a tripartite distinction between impairment, disability and handicap. It can be used as a resource at four different levels-for enlightenment about the nature of disablement prob- lems and how they might relate to policies and services; as three detailed classification schemes to facilitate structuring of data about impairment, dis- ability and handicap respectively; as a framework which provides an agenda for appraisal and assess- ment; and for facilitating management functions, perhaps especially the evaluation of care. Philosoph- ical and ideological criticisms of the ICIDH are dis- cussed, and means for applying what has proved to be the most controversial component or dimension, the handicap code, are illustrated. At the root of many difficulties is people's failure to appreciate that the same pieces of information can be used to illuminate complementary aspects of problems when the data are regarded from different perspectives. Further experience along the lines currently being undertaken should not only resolve many of the difficulties, but should also encourage more wide- spread adoption of the approach underlying the ICIDH. RESUME Mesure des consequences des maladies La Classification internationale des handicaps: defi- ciences, incapacites et desavantages (CIH) a ete eta- blie pour mesurer !'impact des maladies et leurs consequences, meme si beaucoup de temps s'est ecoule avant que les classifications n'acquierent une certaine notoriete. Apres avoir brievement expose les origines de la CIH l'auteur de cet article evoque la base des differents types de problemes de sante et des possibilites qu'offrent la Classification interna- tionale des maladies (CIM) et la CIH pour l'etude de ces problemes. La CIH repose sur la distinction entre deficiences, incapacites et desavantages. Elle peut etre utilisee a quatre niveaux differents - pour donner des eclaircissements sur la nature des handi- caps et la fayon dont ils interessent les politiques et les services; pour fournir trois systemes detailles de classification facilitant la structuration de donnees sur les deficiences, les incapacites et les desavan- tages; comme cadre offrant un calendrier pour !'ap- preciation et !'evaluation; et pour faciliter certaines fonctions de gestion et peut-dire tout particuliere- ment !'evaluation des soins. Les .critiques d'ordre philosophique et ideologique adressees a la classifi- cation sont evoquees et les moyens d'appliquer ce qui s'est avere !'element le plus controverse de l'ouvrage, le code des desavantages, sont illustres. De nombreuses difficultes tiennent de ce que l'on ne se rend souvent pas compte que les memes ele- ments d'information peuvent servir a eclairer des aspects complementaires des problemes lorsque les donnees sont envisagees sous des angles differents. Une plus grande experience dans la voie actuelle- ment choisie devrait non seulement resoudre beau- coup de ces difficultes mais encourager aussi une utilisation plus generale de l'approche qui est a l'origine de la CIH. REFERENCES- REFERENCES 1. WORLD HEALTH ORGANIZATION. International Classi- fication of Impairments, Disabilities, and Hand- icaps-a manual of classification relating to the consequences of disease. Geneva, WHO, 1980. (Pour !'edition franc;:aise, voir reference (17)). 2. REGISTRAR GENERAL OF ENGLAND AND WALES. Sixteenth annual report, 1856. (Appendix, p. 75). 3. WORLD HEALTH ORGANIZATION. Manual of the inter- national statistical classification of diseases, in- juries and causes of death. Ninth Revision. Geneva, WHO, 1977. ORGANISATION MONDIALE DE LA SANTE. Manuel de la classification statistique internationale des ma/a- dies, traumatismes et causes de deces. Neu- vieme revision. Geneve, OMS, 1977. 4. WooD, P. H. N. Prospects for control. In: Wilson, Sir John (ed.), Disability prevention: the global challenge. Oxford, Oxford University Press for the Leeds Castle Foundation, 1983. (Chapter 7, p. 92). 5. BADLEY, E. M. ET AL The prevalence and severity of major disabling conditions-a reappraisal of the Government Social Survey on the hand- icapped and impaired in Great Britain. Inter- national journal of epidemiology, 7: 145-151 (1978). Wld hlth statist. quan., 42 (1989) - 121 - 6. WooD, P. H. N. Appreciating the consequences of disease: the International Classification of Im- pairments, Disabilities, and Handicaps. WHO Chronicle, 34: 376-380 (1980) WOOD, P. H. N. Comment mesurer les con- sequences de la maladie: la classification inter- nationale des infirmites, incapacites et handi- caps. Chronique OMS, 34: 400-405 (1980). 7. WooD, P.H. N. Advances in the classification of disease. In: Smith, A. (ed.), Recent advances in community medicine. Edinburgh, Churchill Livingstone, 1982. (Vol. 2. chapter 13, pp. 169- 183). 8. WOOD, P. H. N. & BADLEY, E. M. People with dis- abilities, toward acquiring information which re- flects more sensitively their problems and needs. New York, World Rehabilitation Fund, 1981. (Monograph No. 12). 9. BURY, M. R. The ICIDH: a review of research and prospects. International disability studies, 9: 118- 122 (1987). 10. Report by the Committee on restrictions against disabled people. London, HMSO, 1982. 11. OFFICE DES PERSONNES HANDICAPEES DU 0UEBEC. A part egale - L 'integration sociale des personnes handicapees: un defi pour tous. Quebec, OPHQ, 1984. 12. BADLEY, E. M. The ICIDH: format, application in different settings, and distinction between dis- ability and handicap. International disability studies, 9: 122-125 (1987). 13. WOOD, P. H. N. Maladies imaginaires: some common misconceptions about the ICIDH. Inter- national disability studies, 9: 125-128 ( 1987). 14. MARTIN, J. ET AL The prevalence of disability among adults. OPCS survey of disability in Great Britain, report 1. Social Survey Division, Office of Population Censuses and Surveys. London, HMSO, 1988. Wld hlth statist. quart., 42 (1989) 15. BADLEY, E. M. A guide to services for physically disabled people in Manchester. Manchester, City Social Services Department, 1982. 16. M1nELSTEN-SCHEID, E. E. Abilities and require- ments profile: a tool to facilitate reintegration of people with disabilities into employment. Inter- national rehabilitation medicine, 7: 82-84 (1985). 17. NoRDENFELT, L. On disabilities and their classifica- tion, a study in the theory of action inspired by the International Classification of Impairments, Disabilities, and Handicaps (IC/OH). Linkoping, University of Linkoping, 1983. (Studies on Health and Society SHS1). 18. FINKELSTEIN, v. Attitudes and disabled people: issues for discussion. New York, World Re- habilitation Fund, 1980. (Monograph No. 5). 19. WILLIAMS, G. H. Disablement and the social con- text of daily activity. International disability studies, 9: 97-102 (1987). 20. BADLEY, E. M. & TENNANT, A. Calderdale health and disablement survey: main report. Manchester, ARC Epidemiology Research Unit, 1988. (Appendix 5, pp.107-114). 21. WooD, P. H. N. ET AL Identification of physical disablement and its validation: an application of the handicap code of the ICIDH. International disability studies, 11: (in press - sous presse). 22. HUNT, S. M. ET AL Measuring health status: a new tool for clinicians and epidemiologists. Journal of the Royal College of General Practitioners, 35:185-188 (1986). 23. ORGANISATION MONDIALE DE LA SANTE. Classification internationale des handicaps: deficiences, inca- pacites et desavantages - un manuel de classifi- cation des consequences des maladies. Paris, CTNERHI-INSERM, 1988. (For the English edition, see reference (1)). 24. CHEN, M. K. Classification of consequences of disease and health care planning and evaluation. International journal of epidemiology, 10: 5-7 (1981). - 122 - SURVEY DESIGN STRATEGIES FOR THE STUDY OF DISABILITY Mary Chamiea Population censuses and household surveys often include questions about disability.b The findings of past surveys about disability, however, have gener- ally been underutilized, or not utilized at all. In addition, while the use of disability questions in surveys is increasing, commensurate adjustments in the analysis and use of disability data are not evi- dent. One major reason for the underutilization of dis- ability statistics is the lack of appropriate guidelines for data collection and analysis. Data analysts, for example, confront a bewildering myriad of detailed impairments (I) and disability (D) codes from sur- veys, often jumbled together without benefit of a meaningful conceptual framework. In addition, there is no standard survey handbook or detailed set of international recommendations for population cen- suses or household surveys to guide researchers in forming appropriate concepts and measures that would assist in the collection and analysis of dis- ability data. Yet, demands for statistics on the sub- ject are growing rapidly. The purpose of this article is to consider inter- national statistical guidelines and recommendations for censuses and surveys needed for improving the collection and analysis of disability data. Screening for disability in census and survey modules In survey research, disabled people are essentially viewed as a special population group of individuals who have in common the fact that they live with long-term functional loss. Functional loss may be assessed not only as an individual clinical char- acteristic needing medical treatment, but also as an aggregate characteristic of populations assessed through survey research by estimating significant shifts in the functional capabilities of populations as a consequence of disease etiology, age composition, • Statistician, Demographic and Social Statistics Branch, United Nations Statistical Office, United Nations, New York. The views expressed in this article are those of the author and do not necessarily reflect those of the United Nations. bThroughout this article the words "disability","disabled persons" and "disablement" are utilized to describe the generic situation of being "disabled", implying that one is part of a special population group broadly referred to in the United Nations World Programme of Action concerning Disabled Persons (7). All references to impair- ments, disabilities and handicaps are the definitions applied to these terms in the WHO/ICIDH classification, relating to the consequences of disease. In the WHO/ICIDH, impairment is "any loss or abnormality of psychological, physiological or anatomical structure or function"; disability is a "restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being"; and handicap is a "disadvantage for a given individual, resulting from an impairment or disability, that limits or prevents the fulfilment of a role that is normal (depending on age, sex, and social and cultural factors) for that individual" and is a classification of "circumstances in which disabled people are likely to find themselves" (9). war and civil strife, nutritional status, different occu- pational and transport-accident patterns, etc. Generally, the first step taken by a government in planning disability programmes and policies is to ask the basic question: "What proportion of the pop- ulation is disabled?". Based on the findings of na- tional population censuses, household surveys and civil registration data, the range of the crude dis- ability rate, defined as the percentage of the total population that is disabled, varies between 0.2% and 20.9% (Fig. 1). Comparisons of crude disability rates across data collection programmes indicate con- siderable variation in the rates both within and across the major data collection types (Fig. 1). Cross- national variations in disability rates are not only due to actual differences in disability rates, but are also the result of differences in survey design, the statistical concepts and definitions used and the survey and screening devices employed. Differences in the age ranges covered by the data- collection programmes are shown in Table 1, as are brief summary descriptions of the specific app- roaches to data collection. In some cases, crude disability rates are not presented in Table 1, either because no denominator permitting the calculation of the rate was available in the published reports, or because the design of the survey was such that estimates of the total population being surveyed were not made. For a number of reasons, the crude disability rates presented in this table are not com- parable. A major reason for this is the effect of the high degree of variation in survey screening used by data-collection programmes. In some cases, disabled people were screened into the disability survey by using a check list that asked about persons in the households having specific impairments, i.e. blind- ness, deafness, loss of speech, paralysis of legs, amputation of limb, etc. (e.g. Bahrain 1980 and Peru 1981 population censuses). In other cases, a general question asking whether any person in the house- hold was impaired was employed as the survey screening device, (e.g. Egyptian population census, 1986). Some data-collection programmes screened people into the survey either by asking a general disability question (Canada 1986 population census) or by using a check list of specific disabilities (United States 1980 population census; New Zealand 1980; Finland 1978 and Norway 1983 living conditions surveys; and the disability survey of Spain, 1986). Some countries assess disability through census questions about economic activity. In such instances, disability status is included in a check list of reasons for not being economically active, along with other possible explanations such as being retired, being a homemaker and having student status (Myanmar (formerly Burma), 1983; Cuba, 1981). In some cen- suses disability is one category in a check list of reasons for not attending school among children and youth (Mexico, 1980; Belize, 1980; Guyana, 1980). Wld hlth statist. quart., 42 (19891 - 123 - FIG.1 PERCENTAGE DISABLED BY DATA-COLLECTION TYPE IN SELECTED COUNTRIES POURCENTAGE DE PERSONNES ATTEINTES D'INCAPACITES PAR TYPE DE COLLECTE DES DONNEES DANS CERTAINS PAYS 21 20 19 18 17 16 15 <I> 14 C) "' 13 E " <.) 12 5 0 0.. 11 " 10 C) "' E 9 " f: 8 f. 7 6 5 4 3 2 1 0 1234567890ABCOEFGH IJKLMNOPORSTU VWX Y Zabcd efghi jklm Country3 - Paysa a See notes - Vair notes. Source: Table I - Tableau I. - Disability - lncapacites ~ Impairment - Oeficiences Total population - Population totale 1 Bahrain - Bahrein 2 Comoros - Comores 3 Egypt - Egypte 4 Hong Kong 5 Indonesia - lndonesie 6 Kuwait - Koweit 7 Mali 8 Netherlands Antilles - Antilles neerlandaises 9 Pakistan O Panama A Peru - Perou B Poland - Pologne C Sri Lanka D St. Helena - Sainte-Helene E Tunisia - Tunisie F Tunisia - Tunisie G Turkey - Turquie H United States of America - Etats-Unis d'Amerique Censuses - Recensements Economically inactive population - Population inactive I Belize J Myanmar K Cape Verde - Cap-Vert L Central African Rep. - Rep. centrafricaine M Cuba N Guyana - Guyane O Ireland - lrlande P Kiribati Q Mexico - Mexique R Philippines S Spain - Espagne T Trinidad and Tobago - Trinite-et-Tobago U Venezuela Wld hlth statist. quart., 42 (1989) NOTES 1981 1980 1976 1981 1980 1980 1976 1981 1981 1980 1981 1978 1981 1976 1975 1984 1975 1980 1980 1983 1980 1975 1981 1980 1981 1978 1980 1980 1981 1980 1981 Surveys - Enquiites Health and/or medical - Hygiene et/ou sante V Canada W Egypt - Egypte X Uruguay Living conditions - Conditions de vie Y Thailand - Thai"lande Demographic and/or socioeconomic - oemographiques et/ou socio-economiques z . China - Chine Ethiopia - Ethiopie Fiji-Fidji Swaziland Thailand - Thailande Disability - lncapacites Australia - Australie Austria - Autriche Canada China - Chine Japan - Japon Nepal - Nepal Philippines Spain - Espagne United Kingdom - Royaume-Uni 1983 1979-81 1984 1981 1983 1979-81 1982 1983 1983 1981 1976 1986 1987 1980 1980 1980 1986 1985-86 - 124 - TABLE 1. PERCENTAGE DISABLED BY YEAR AND TYPE OF DATA COLLECTION AND AGE GROUP COVERED FOR SELECTED COUNTRIES TABLEAU 1. POURCENTAGE DE PERSONNES ATTEINTES D'INCAPACITES PAR ANNEE, TYPE DE COLLECTE DES DONNEES ET GROUPE D'I\GE DANS CERTAINS PAYS Country/area - Pays/zone A. CENSUSES - RECENSEMENTS Bahrain - Bahre'in Comoros - Comores Egypt - Egypte Hong Kong Indonesia - lndonesie Kuwait - Kowe'it Mali Netherlands Antilles - Antilles neerlandaises Pakistan Panama Peru - Perou Poland - Pologne Sri Lanka St. Helena - Sainte-Helene Tunisia - Tunisie Tunisia - Tunisie Turkey - Turquie United States of America Etats-Unis d'Amerique Belize Myanmar Cape Verde - Cap-Vert Central African Rep. - Republique centrafricaine Cuba Guyana Ireland - lrlande Kiribati Mexico - Mexique Philippines Spain - Espagne Trinidad and Tobago - Tri n ite-et-Tobago Venezuela Jordan - Jordanie B. SURVEYS - ENOUETES Canada Egypt - Egypte United States of America - Etats-Unis d' Amerique Uruguay Year Age group - Groupe d'age Comment - Remarques An nee Total population - Population totale 1981 All ages - Taus ages 1980 1976 1981 1980 Disabilities, not disabled persons - Recensement des incapacites et non des personnes atteintes d'incapacites 1980 1976 1981 1981 1980 0-39 1981 All ages - Taus ages 1978 1981 Disabilities, not disabled persons - Recensement des incapacites et non des personnes atteintes d'incapacites 1976 1975 1984 1975 1980 16-64 Economically inactive population - Population inactive 1980 15+ Not attending school - Population non scolarisee 1983 10+ 1980 10+ 1975 10+ 1981 15+ 1980 15+ Not attending school - Population non scolarisee 1981 15+ 1978 15+ 1980 6-14 Not attending school - Population non scolarisee 1980 15+ 1981 All ages - Taus ages 1980 15+ 1981 12+ Agricultural - Population agricole 1983 All ages - Taus ages Disabled persons only - Personnes atteintes d'incapacites seulement Health and/or medical - Hygiene et/ou sante 1983 All ages - Taus ages 1979-81 198" Disability rate by type of disability only - Taux d'incapacite par type d'incapacite seulement 1984 45+ Montevideo, chronically ill - Malades chroniques a Montevideo Sex ratio Percentage a Taux de Pourcentage a masculinite 1.0 1.23 1.7 1.33 0.3 2.81 0.8 1.1 0.4 1.43 3.0 1.04 2.9 1.31 0.5 0.73 0.7 1.27 0.2 7.1 0.4 1.44 1.6 0.84 0.8 1.54 0.9 1.61 1.5 1.44 8.5 1.1" 2.5b 1.23 0.4b 2.06 4.3c 0.71 1.1c 1.27 1.7b 4.60 2.3b 1.04 3.5c 1.61 0.5c 1.75 2.8d 1.08 4.4b 1.36 5.1b 1.33 1.1c 1.42 3.8b 4.28 11.2 0.90 1.5 1.57 11.3 0.98 Wld hlth statist. quart., 42 (1989) Country/area - Pays/zone Denmark - Danemark Finland - Finlande New Zealand - Nouvelle-Zelande Norway - Norvege Sweden - Suede Thailand - Tha'ilande - 125 - Year Age group - Groupe d'iige Comment - Remarques An nee 1976 1978 1980 1983 1980-81 1981 Living conditions - Conditions de vie 20-69 15+ 15+ 16-79 16-84 All ages -Tous ages Disability rate by type of disability only - Taux d'incapacite par type d'incapacite seulement .. Disability rate= 15.0 for males, 20.0 for females - Taux d'incapacite = 15,0 pour les hommes, 20,0 pour les femmes Disability rate by type of disability only - Taux d'incapacite par type d'incapacite seulement Percentage• Pourcentage a 0.8 Sex ratio Taux de masculinit0 0.75 1.34 Demographic and/or socioeconomic - Demographiques et/ou socio-economiques China e. 1 - Chine e. 1 Ethiopia - Ethiopie Fiji-Fidji Swaziland Thailande - Thai'lande Australia - Australie Austria - Autriche Canada e, 9 China e. 1 - Chine e, 1 Germany, Fed. Rep. of - Allemagne, Rep. fed. d' India- lnde Japan - Japon Nepal - Nepal Philippines Spain e • h - Espagne e · h Trinidad and Tobago - Trinite-et-Tobago United Kingdom e,; - Royaume-Uni e ·; Zimbabwe 1983 0-14 1979-81 All ages - Tous ages. 1982 1983 1983 6-24 Rural - Population rurale Not economically active - Population inactive Rural - Population rurale Not attending school - Population non scolarisee Disability - lncapacites 1981 All ages - Tous ages 1976 1986 1987 1983 Continuous registration - Enregistrement continu 1981 Disability rate by type of disability only - Taux d'incapacite par type d'incapacite seulement 1980 18+ Living at home - Vivant a la maison 1980 All ages - Taus ages. 1980 1986 1982 3-16 Disabled persons only - Personnes atteintes d'incapacites seulement 1985-86 16+ 1981 All ages -Tous ages. Disabled persons only - Personnes atteintes d'incapacites seulement C. REGISTRATION AND OTHER TYPES - TYPES DIVERS D'ENREGISTREMENT Jamaica - Jama'ique 1978 Schools - Ecoles 4-11 Disabled children only - Enfants atteints d'incapacites seulement Genera/non-probability survey - Enquete generale non probabiliste Kenya Ethiopia - Ethiopie Jordan - Jordanie Lebanon - Liban United Kingdom - Royaume-Uni Wld hlth statist. quart., 42 (1989) 1981 15+ Disabled persons only - Personnes atteintes d'incapacites seulement Registration campaign - Campagne d'enregistrement 1981 1979 1980 1978 0-14 All ages -Tous ages. 3-60 All ages - Taus ages. Disabled persons only - Personnes atteintes d'incapacites seulement Disabled persons only - Personnes atteintes d'incapacites seulement Northern Ireland only - lrlande du Nord seulement 1.4 5.5 0.9b 2.5 2.2 13.2 1.13 3.25 1.05 20.9 0.91 13.2 0.92 4.9 M:11.8 1.20 F: 9.8 2.4 3.0 4.4 15.0 13.5 0.2 1.36 0.94 0.75 - 126 - TABLE 1 (continued) TABLEAU 1 (suite) Country/area - Pays/zone Year Age group - Groupe d'age Comment - Remarques Percentage a Pourcentage a Sex ratio Taux de masculinite An nee Disability registration - Enregistrement des incapacites Singapore - Singapour 1985 All ages - Taus ages. Disabled persons only - • Percentage disabled of total population. b Disabled and not economically active All not economically active c Disabled and not economically active Total population d Disabled children not attending school All children not atttending school e New data source, not yet in data base (see country reference below). I Reference ( 4) • Reference (2) h Reference (21) ' Reference (22) Source: United Nations Disability Statistics Data Base (DISTAT, 1987), 1988. One survey strategy to assess disability that is especially noteworthy and deserving of attention is to combine data-collection programmes. For example, in its 1986 population census Canada used a question to identify disabled persons who had activity limitations from long-term physical, mental or health conditions. The broad censu~ question, which had four parts, asked of each person in the household the following (Box 1) (1). Box 1. Broad census question on disability (1986 Census of Canada) Are you limited in the kind or amount of activity that you can do because of a long-term physical condition, mental condition or health problem: (a) At home? (No, I am not limited; Yes, I am limited) (b) At school or at work? (c) In other activities, e.g. transportation to or from ,work, leisure-time activities? (No, I am not limited; Yes, I am limited) (d) Do you have any long-term disabilities or handicaps? (No; Yes) The results of the above question provided the basis for developing a sampling frame for the Canadian Health and Activity Limitations Survey (HALS), which was fielded immediately following the 1986 population census. HALS was based on a national, multi-stage stratified sample using geographical and other demographic information from the 1986 population census questionnaires (2). Personal interviews were completed with 120 OOO individuals who responded "Yes" to any part of the disability census question; and telephone interviews were conducted with approximately 80 OOO individuals who responded "No" to all parts of the census question on disability (Box 2) (3). Children were asked slightly different questions than adults. The second part of HALS was a survey of disabled persons residing in institutions and was conducted in 1987. The crude disability rate of HALS was 13.3%.c ~For details of the data-collection programme, please contact Adele D. Furrie, Program Manager, Health and Activity Survey, 209, Jean Talon Building, Tunney's Pasture, Ottawa, Ontario, K1A OT6, Canada. Personnes atteintes d'incapacites seulement a Pourcentage de personnes atteintes d'incapacit€:s pour !'ensemble de la ropulation. Population inactive et atteinte d'incapacites Population inactive Population inactive et atteinte d'incapacites Population totale d Enfants non scotarises et atteints d'incapacites Enfants non scolarises e Nouvelle source d'informations non encore enregistrees dans la base de donnees (voir references concernant les pays ci-dessous). I Reference ( 4) • Reference (2) ' Reference (2 ll ' Reference (22) Source: United Nations Disability Statistics Data Base (DISTAT, 1987), 1988. From these basic 21 screening questions, a total of seven disability categories were defined: (i) mobility (limited in ability to walk, move from room to room, carry an object for 10 metres, or stand for long periods); (ii) agility (limited in ability to bend, dress or undress oneself, get in and out of bed, cut toenails, tie shoes, use fingers to grasp or handle objects, reach or cut own food); (iii) seeing (limited in ability to read ordinary newsprint or to see someone from 4 metres, even when wearing glasses); (iv) hearing (limited in ability to hear what is being said in a conversation with one other per- son or two or more persons, even when wearing a hearing' aid); (v) speaking (limited in ability to speak and be understood); (vi) other (limited because of learning disability or emotional or psychiatric dis- ability, or because of developmental delay); (vii) unknown (limited but nature not specified). Multiple disabilities were estimated through the analysis of the above 21 questions, allowing for 2-6 types of disabilities to be grouped into multiple disability categories. This streamlined survey approach results in a gen- eral description of disability that is meaningful for the planning of housing, transport, special needs and related services, and manages to avoid the presentation of detailed tabulations by each impair- ment and/or disability identified in the screening procedure. As a consequence, statistical presentation of this sort is considerably less complex and less awkward because the 21 screening questions are categorized into seven broad and meaningful cat- egories of disability. This survey (and a number of other surveys re- viewed in this article) wisely went beyond questions concerning type of disability and covered other im- portant topics for policy and planning purposes. HALS, for example, also asked about the participa- tion of disabled people in activities outside the home (e.g. education and labour-force participation, recrea- tion and leisure), descriptions of obstacles to part- icipation in various activities experienced by dis- abled persons (e.g. need help at home, a special aid, inadequate transport, etc.). primary causes of dis- ability, and special services received. Topics covered in censuses and surveys While estimates of the crude disability rate may indicate the magnitude of the problem, they are W/d hlth statist. quart., 42 (1989) - 127 - Box 2. Detailed disability screening questions used in HALS (Canada) I would like to ask you about your ability to do certain activities, even when using a special aid. Please report only those problems which you expect to last six months or more. 1. Do you have any trouble hearing what is said in a normal conversation with one other person? (At what age did you first have trouble doing this? Are you completely unable to do this? What is the main condition or health problem which causes you trouble hearing what is said in a normal conversation with one other person?) [Followed by a check list of selections for best describing the condition.] 2. Do you have any trouble hearing what is said in a group conversation with at least three other people? [All the screening questions were followed by a series of questions similar to the ones shown in parentheses in question 1, but modified to take into consideration the specific disability.] 3. Do you have any trouble seeing clearly the print on this page? 4. Do you have any trouble seeing clearly the face of someone from 12 feet/4 metres (example: across a room), with glasses if normally worn? 5. Do you have any trouble speaking and being understood because of a condition or health problem? 6. Do you have any trouble walking 400 yards/400 metres without resting (about a quarter of a mile)? 7. Do you have any trouble walking up and down a flight of stairs, that is about 12 steps? 8. Do you have any trouble carrying an object of 10 pounds for 30 feet/5 kg for 10 metres (example: carrying a 10-pound bag of flour)? 9. Do you have any trouble moving from one room to another or moving about in a room? 10. Do you have any trouble standing for long periods of time, that is, more than 20 minutes? (Remember, I am asking about problems expected to last six months or more.) 11. When standing, do you have any trouble bending down and picking up an object from the floor (example: a shoe)? 12. Do you have any trouble dressing and undressing yourself? 13. Do you have any trouble getting in and out of bed? 14. Do you have any trouble cutting your own toenails or tying your own shoelaces? 15. Do you have any trouble using your fingers to grasp or handle, for example using scissors or pliers? 16. Do you have any trouble reaching in any direction (example: above your head)? 17. Do you have any trouble cutting your own food? 18. Because of a long-term physical condition or health problem, that is, one that is expected to last six months or more, are you limited in the kind or amount of activity you can do ... at home? ... at school, at work or supporting yourself by such activities as fishing, trapping or crafts? in other activities such as travel, sports, or leisure? [Yes or no to each question.] 19. Has a school, or health professional ever told you that you have a learning disability? 20. From time to time, everyone has trouble remembering the name of a familiar person, or learning something new, or they experience moments of confusion. However, do you have any ongoing problems with your ability to remember or learn? 21. Because of a long-term emotional, psychological, nervous, or mental health condition or problem, are you limited in the kind or amount of activity you can do? insufficient since they do not adequately describe its other important dimensions. Additional topics for analysis are required in order to determine the relationship between the disabled person and other individual characteristics and environmental situations. The 1987 national survey of disability in China, for example, reported a crude disability rate of 4.91%, indicating that approximately 1 out of 20 persons is disabled (4). In addition, this same survey found that 18% of households in China have a disabled household member, indicating that nearly 1 out of 5 households in China is involved in the day-to-day concerns of the disabled. Further statistical analysis of this monumental survey of 1.25 million households will undoubtedly yield additional dimensions of the problem, with significant policy and programme implications. Wld hlth statist. quart., 42 (1989) Even though disability rates vary widely across surveys and are often not comparable, analytic relationships observed within national data sets appear to be reasonably consistent. In general, data analysis within national data sets shows that disability rates are higher among: (a) persons who have lower educational attainment and lower occupational status; (b) older age groups of women and men; and (c) rural residents (5). Also, in general, more impoverished areas within countries have higher disability rates than areas that are economically more advantaged (5-6) .. In contrast, international comparisons are consider- ably more problematic and complex. For instance, developed countries generally ,report higher crude disability rates than do developing countries (Table 1). - 128 - In this case, the differences in the percentage dis- abled across countries are believed to be the result not only of different age structures, but also of survey design differences largely owing to variations in screening techniques and in definitions of dis- ability. The developing countries of Asia and Africa have generally used screening techniques that are impairment-specific and limited in scope (e.g. blind, deaf, paralyzed, amputee, etc.) resulting in the identi- fication of the most severely (visibly) affected cases of disablement, e.g. profound vision or hearing loss, amputation of limb, bilateral paralysis of lower limbs and severe behavioural problems of mental illness or intellectual impairment. Developed countries more often use broad-ranging disability survey screens concerning functional and activity limitations such as hearing, walking several blocks, seeing small print or seeing faces across a room, personal care activities, work limitations, etc. Broad-ranging disability questions screen in larger proportions of the population as disabled, probably because the severity of the problem is less than when specific impairments are described, i.e. blindness, deafness, complete loss of speech, etc. In any attempts to set up an international survey design strategy for house- hold surveys asking about disability, cross-national comparisons would be substantially improved if agreement could be reached on a general conceptual approach to be used in screening procedures. Table 2 presents by country a listing of topics pub- lished in statistical reports on disability that are useful for monitoring the United Nations World Pro- gramme of Action concerning Disabled Persons (7). The topics selected for presentation are proposed in order to develop an analytic framework for the study of disability based upon some of this Programme of Action's major themes, such as: (a) improving part- icipation of disabled persons in decision-making; (b) prevention programmes; (c) rehabilitation; (d) equa- lization of opportunities; and (e) community action. These have been classified in this article into four major areas for survey monitoring: demographic, socioeconomic, household and family char- acteristics, and descriptions of the disability-specific experience. The detailed topics covered by censuses and surveys under the four broad areas of Table 2 are provided in Box 3. Item 17 under the last category covers a number of topics that have just begun to be explored with disability data sets, for example leisure, sports, politi- cal participation, cultural adaptation and use of trans- port systems by disabled persons. The findings in Table 2 are stratified in order to show how survey coverage of topics varies by country according to the type of data-collection programme. The findings indicate that, in 55 countries, the most common subjects covered by data-collection pro- grammes on disabled persons are demographic: age, sex and residence status. Population censuses focus- ing only on the economically inactive population, demographic and socioeconomic surveys, and na- d Enquiries concerning DISTAT may be addressed to Director, Statistical Office, United Nations, New York, N.Y. 10017, United States of America. "The forthcoming statistical compendium is based upon two reports that were reviewed by the Global meeting of experts to review the implementation of the World Programme of Action concerning Disabled Persons at the mid-point of the United Nations Decade of Disabled Persons, Stockholm, 17-22 August 1987. The experts recommended to the General Assembly that the statistics from DISTAT be made available in published form. The reports were reviewed by the experts under the symbols CSDHA/DDP/GME/ 4 and CSDHA/DDP/GME.CRP.1. tional registration systems do not usually go beyond the basic demographic subjects; exceptions, however, are for countries that implemented non-probability one-time registration campaigns, e.g. Kenya (1981), Jordan (1979), Ethiopia (1981), Lebanon (1980), and Northern Ireland (1978). Information on household and family status, and descriptions of the disability-specific experience, were more often available from population censuses that asked questions of the total population, health and Box 3. Topics covered by censuses and surveys (World Programme of Action concerning Disabled Persons) Demographic 1. Age group and sex 2. Urban/rural residence Socioeconomic 3. Educational attainment 4. Economic activity 5. Occupation/industry 6. Marital status Household and family information 7. Household information 8. Family composition 9. Income (personal and household) Describing the disability experience 10. Additional impairments 11. Age at onset 12. Cause of impairment 13. Disability status 14. Severity of impairment or disability 15. Special aids used 16. Services or treatment received 17. Special topics medical surveys, and surveys of living conditions. The most detailed coverage of topics, however, was given by national disability surveys (Table 2). The International Disability Statistics Data Base (DISTAT) Increased national concern has led to the global monitoring of disability statistics and disability pro- grammes by the United Nations (7). In the process of setting up a system for monitoring national pro- gress, the United Nations Statistical Office has prod- uced several studies that present data compilation strategies and analyse disability statistics from na- tional population censuses, household surveys and civil registration systems. A case study of five coun- tries (5) describes national definitions and concepts of disability, presents national statistics from popula- tion censuses, national household surveys and civil registration systems, and offers examples of demo- graphic methods available for the study of disability. This work was followed up by the development of the International Disability Statistics Data Base (DISTAT), now being distributed on microcomputer diskettes for use in spreadsheet software pro- grams (8).d DISTAT includes aggregate statistics from 63 programmes in 55 countries. Countries in- cluded in DISTAT are shown above in Table 1. The United Nations Statistical Office is preparing a com- pendium of national statistics from DISTAT to be published in 1989, which provide detailed disability statistics for the 55 countries listed in Table 1.e Wld hlth statist. quart., 42 (1989) - 129 - TABLE 2. TOPICS COVERED IN PUBLISHED REPORTS CONCERNING DISABILITY BY YEAR AND TYPE OF DATA COLLECTION AND AGE GROUP COVERED, FOR SELECTED COUNTRIES TABLEAU 2. SUJETS COUVERTS DANS DES RAPPORTS SUR L'INCAPACITE PAR ANNEE, TYPE DE COLLECTE DES DONNEES ET GROUPE D'AGE DANS CERTAINS PAYS Country/area - Pays/zone Year Age group Topics covereda - Sujets couverts a An nee Groupe d'age 2 3 4 5 6 7 a 9 10 11 12 13 A. CENSUSES - RECENSEMENTS Total population - Population totale Bahrain - Bahre·in 1981 All ages - Tous ages x x x x Comoros - Comores 1980 x Egypt - Egypte 1976 x x x x Hong Kong 1981 x x x x x x x Indonesia - lndonesie 1980 x Kuwait - Kowe"it 1980 x x x x Mali 1976 x x Mexico - Mexique 1980 6-14 x Netherlands Antilles - Antilles neerlandaises 1981 All ages - Tous ages x Pakistan 1981 x x Panama 1980 x x Peru - Perou 1981 x x x Poland - Pologne 1978 x Sri Lanka 1981 x x x x x x x St. Helena - Sainte-Helene 1976 x x Tunisia - Tunisie 1984 x x x Tunisia - Tunisie 1975 x x x x Turkey - Turquie 1975 x x United States of America - Etats-Unis d'Amerique 1980 16-64 x x Economically inactive - Population inactive Belize 1980 15+ x Myanmar 1983 10+ x x Cape Verde - Cap-Vert 1980 10+ x Central African Rep. - Republique centrafricaine 1975 10+ x x Cuba 1981 15+ x Guyana 1980 15+ x Ireland - lrlande 1981 15+ x Kiribati 1978 15+ x Philippines 1980 All ages - Tous ages x x Spain - Espagne 1981 x Trinidad and Tobago - Trinite-et-Tobago 1980 15+ x Venezuela 1981 12+ x x Agricultural - Population agricole Jordan - Jordanie 1983 All ages - Tous ages x B. SURVEYS - ENOUETES Health and medical - Hygiene et sante Canada 1983 All ages - Tous ages x x x x x x x x x Egypt - Egypte 1979-81 x x x x x United States of America - Etats-Unis d'Amerique 1982 x x x Uruguay 1984 45+ x x Living conditions - Conditions de vie Denmark - Danemark 1976 20-69 x x x Finland - Finlande 1978 15+ x x x x New Zealand - Nouvelle-Zelande 1980-81 15+ x Norway - Norvege 1983 16-79 x x x x x x Sweden - Suede 1980-81 16-84 x x x x x x x Thailand - Tha"ilande 1981 All ages -Tous ages x x Demographic and socioeconomic - Facteurs demographiques et socio-economiques Fiji-Fidji 1982 All ages - Tous ages x x China - Chine 1983 0-14 x x Ethiopia - Ethiopie 1979-81 All ages -Tous ages x Swaziland 1983 x Thailand - Tha"ilande 1983 6-24 x x Wld hlth statist. quart., 42 (1989) 14 15 x x x 16 x 17 x x x x x x - 130 - TABLE 2 (continued) Country/area - Pays/zone Year An nee Age group Groupe d' age TABLEAU 2 (suite) Topics covered8 - Sujets couverts 8 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 Disability - lncapacites Australia - Australie 1981 All ages - Taus ages x x x x x x x x x x x Austria - Autriche 1976 x x x x x x x x Germany, Fed. Rep. of - Allemagne, Rep. fed. d' 1983 x x x x x India- lnde 1981 x x x x x x Japan - Japan 1980 18+ x x x x x x x Nepal - Nepal 1980 All ages - Taus ages x x x x x x Philippines 1980 15+ x x x x x x x x x Trinidad and Tobago - Trinite-et-Tobago 1982 3-16 x Zimbabwe 1981 All ages - Taus ages x x x x x x x C. REGISTRATION AND OTHER TYPES - TYPES DIVERS D'ENREGISTREMENT Schools - Ecoles Jamaica - Jama'ique 1978 4-11 x x x x General non-probability survey - Enquete generale non probabiliste Kenya 1981 15+ x x x x x x x Registration campaign - Campagne d'enregistrement Ethiopia - Ethiopie Jordan - Jordanie Lebanon - Liban Ireland - lrlande 1981 1979 1981 1978 0-14 x x x x x x x All ages - Taus ages x 3-60 x All ages - Taus ages x x Disability registration - Enregistrement des incapacites Singapore - Singapour 1985 All ages - Taus ages x • See Box 3 - Voir Encadre 3. Source: United Nations Disability Statistics Data Base (DISTAT, 1987), 1988. These international activities aim to increase both discussion and use of national disability statistics, and offer opportunities for classifying survey work according to the WHO International Classification of Impairments, Disabilities, and Handicaps (ICIDH) (9, 10). Initial analysis of DISTAT suggests that this data base offers a rich research environment for develop- ing standards for survey use of the ICIDH and for classifying causes of impairments, technical aids used by disabled people, and services received. In addition, DISTAT provides a complex and detailed data base in which to experiment with variations in data organization, analysis and presentation tech- niques for studying disability (11-14). Integration of JC/OH into 0/STAT Reframing the definition of health to include a con- cern for the quality of life of persons who survive disease and trauma has led to increased interest in alternative ways to assess disability. Disability was recently classified by WHO in a way that reached beyond medical diagnosis of disease or trauma and moved on to classifying long-term effects phys- iologically, behaviourally, and socioeconomically (9). In addition, international attention to the interaction between the environment and the functional loss experienced by an individual has served to highlight the need for a common socioeconomic, health and medical framework to study the impact of disability. The ICIDH definition, which is divided into impair- ment, disability and handicap, has moved the study of the consequences of disease closer to the socio- economic and demographic frameworks used by health specialists, policy makers, demographers and economists for the study of health and living con- ditions. One of the main reasons for the unsatisfactory des- cription of disability in existing disease classific- ations is that it is defined in different terms by a wide range of professional and other interest groups. It is accurate to say that disability is a diagnosis made by physicians; however, it is also correct to say that disability is defined by com- munities, observed and experienced by disabled people and by family members. The role of the ICIDH is to try to accommodate in a single classifica- tion system widely different descriptions of the alter- ed physical and/or mental state of an individual for use by physicians, disabled people, scientists, edu- cators, lawyers, architects, city planners, the media and the public. Requirements for classifying de- scriptions of impairments and disabilities for use by health professionals and for a wide range of other interest groups differ; they are not, however, incom- patible. ICIDH tries to accommodate both detailed medical requirements and general statements of dis- ablement into one large classification system, using 1- to 4-digit codes to allow for variation in detail and description of impairments, disabilities and handicaps. The ICIDH has the potential to provide a conceptual link between survey reporting of disabled people Wld hlth statist. quart., 42 (19891 - 131 - and their families, and the medical and health com- ponents of disability. It has done this through reasonable grouping of impaired and/or disabled persons into medically and functionally logical cat- egories. DISTAT is laid out in such a way that it provides an analytic environment for standardizing the findings of surveys and censuses. Using aggregate national statistics from published sources, DISTAT sys- tematically groups classifications of disabled people, as reported in censuses, surveys and registration systems, into meaningful subgroups through the use of impairment or disability codes of the ICIDH. Spe- cial groups of disabled people are coded into the data base according to their estimated location in either the impairment or the disability classification. DISTAT was designed so that each impairment and disability classification used by the national sources for screening disabled persons into the survey was coded so as to fit as closely as possible into the 4-digit ICIDH classification of impairments and dis- abilities. The national terms used to describe impair- ments and disability characteristics in censuses and surveys were also entered into the data base without modification under the appropriate ICIDH codes, so that the original labels of censuses and surveys describing disability are also maintained and may be evaluated. Codes that did not fit into the ICIDH scheme were put into existing ICIDH categories of "Other", in order to assess the extent to which the ICIDH is useful for guiding and standardizing the classifications of disablement used by different countries. Classification of impairments and disabilities in survey programmes In the absence of international census or survey recommendations that provide a unified strategy for classifying disabled persons screened into surveys, there is a great diversity of survey research methods used to identify disabled persons. When disabled people are screened into a national disability survey by a question on impairment char- acteristics, the survey interviewer typically asks the person to also describe his/her disabilities associated with the reported impairment. Likewise, persons screened into a national disability survey according to a specific reported disability are often asked to describe the impairments that are the underlying cause of the reported disability. This practice is not always followed in a population census. Census questions usually are either solely impairment- oriented (e.g. Bahrain 1981; Egypt 1976; Hong Kong 1981; Mali 1976; Pakistan 1981; and Peru 1981), or solely disability-oriented (Canada 1986; Mexico 1980; Poland 1978; and the United States 1980). An analysis of the findings for these two different techniques indicates that impairment-based screen- ing seems to result in lower crude disability rates and higher sex-ratios of percentage disabled (higher percentage of men than women disabled), whereas disability-based screening generally results in higher crude disability rates and sex-ratios closer to 1, or in some cases, lower (indicating higher disability rates among women than men) (Fig. 1). This general difference may be due to differences in definitions I See Using the international classification of impairments, disabilities and handicaps in surveys: the experience of Spain, p. OOO of this issue. Wld hlth statist. quart., 42 ( 1989) that result in divergent patterns of reporting of morbidity for men and women when various types of questions about disability and impairment are asked.f One may note that in Fig. 1, among surveys using an impairment screen, the highest rate of disabled was from the survey of chronically ill persons 45 years and older in Montevideo (Uruguay). In this survey, the high rate of disabled noted, i.e. 11.3%, is due to the fact that the sampled population was composed of chronically ill older persons. In all other cases where total populations were screened using an impairment question, the resultant rate of disabled was much lower, ranging from 0.3% to 5.5%. Among disability screens, in contrast, the range was from 7.1% to 20.9%. Table 3 displays the impairment and disability codes incorporated into DISTAT in order to group disabled people, as classified in the 63 national data- collection programmes of 55 countries in DISTAT. From Table 3 it is obvious that substantially fewer categories of disabled persons should be used in survey research. Without simplification, data ana- lyses become unreasonably cumbersome and dif- ficult. Therefore, an area where further research is needed is in the development of a relatively stand- ardized conceptual strategy and a more simplified survey method for identifying disabled persons through reporting of impairment or disabilities, based upon the ICIDH classification scheme. As may be seen in Table 3, some categories of impairments are used more frequently than others. Regrouping of rare codes into broader impairment categories would result in a short list. One possible short list can be suggested based upon the findings of Table 3 and is provided for consideration in Boxes 4 & 5. The need for additional survey classification schemes for assessing disability Once screened into the survey, disabled people are interviewed in order to assess their circumstances. Disabled persons (or sometimes other household members) are asked to describe their experience with disability. This may include questions on the age at onset of an impairment or disability, the cause of the impairment or disability, or special aids used to accommodate functional limitations, such as a wheelchair, Braille book, or a cane (see Table 2, topics 10-17). They may also be asked about the use of disability-related programmes, such as rehabilita- tion, or physical therapy. These questions are dis- ability-specific, and have a built-in medical and health component. Disability-specific questions also need further meth- odological improvement. There are relatively few survey standards available for asking about dis- ability-specific experiences. For example, survey classifications of special aids used by disabled per- sons to address disability-specific accommodations are not yet available. Available data in DISTAT for the study of special aids used and the types of classifications tried by countries are indicated in topic 15 of Table 2. A streamlined classification for use in survey report- ing of causes of impairment that could be based upon the WHO International Classification of Dis- eases is also urgently needed so that survey findings - 132 - FIG.2 INTERACTION OF DISABLED PERSONS AND THE ENVIRONMENT TO EXPLAIN HANDICAP DISABLED PERSON Impairments Disabilities Age, sex CoMMUNITY. (ENVIRONMENT) Unemployment rate Illiteracy levels Poverty levels Available transport systems Available legal system Medical care organization Public health system Social and economic welfare system Household and family formation practices Population consumption patterns Housing characteristics Norms and attitudes may be both meaningful medically, and reasonably comparable.9 Prevention programmes require a standardized survey classification of causes for de- termining programme priorities, including reporting reasons for disability outside of accepted medical explanations, e.g. caused by a curse on the family, inappropriate family behaviour, witchcraft, etc., all indicating the need for public education. Countries that covered cause of impairment in their data- collection programmes are indicated in topic 12 of Table 2. g Preliminary work has been done on ways of using the ICD for classification of causes of impairment, and these have been tried in a UN Statistical Office working paper (reference ( 14), pp. 16-17), which reflects the following decision: "rather than concentrate on the specific category of injury or nature of the condition, that it is more meaningful in survey reporting to identify and classify external cause of injury and poisoning through the use of the supplementary classification scheme of the ICD, external cause (E) code". In addition to injury, other broad categories of cause proposed for surveys were: (a) infectious and parasitic diseases, (b) congenital anomalies and perinatal conditions; and (c) other diseases and conditions. HANDICAP Economic activity Income generation Occupational status Occupational mobility Social participation Political participation Leisure, sports and cultural participation Type of transport used Nutritional status School attendance Educational attainment Living conditions In addition, there are no standards for classifying obstacles faced by disabled persons and their family in such areas as transportation and education, nor of assessing their financial implications. Some pre- liminary work on barriers has begun, and survey experience in this area is likely to prove useful in furthering the development of a classification of so- cial, economic and programme barriers, or obstacles, that disabled people experience because of an impair- ment or disability (2, 15). Examples of assessment of obstacles in some national data-collection pro- grammes may be found in topic 17 of Table 2. In addition to the coverage of disability-specific topics, the special population groups of impaired or disabled persons in DISTAT may also be compared according to topics dealing with description of their environ- ment, description of their current socioeconomic and demographic conditions and current use of services (topics 2-9 in Table 2 ). Wld hlth statist. quart., 42 (1989) - 133 - TABLE 3. ICIDH CODES USED BY DISTAT FOR REPORTING IMPAIRMENTS AND DISABILITIES IN 55 COUNTRIES TABLEAU 3. CODES CIH UTILISES PAR LE DISTAT POUR LA DECLARATION DES DEFICIENCES ET INCAPACITES DANS55 PAYS Detailed code of ICIDH classification - Code detaille de la classification CIH IMPAIRMENT - DEFICIENCES Code 1. Intellectual - lntellectuelles Mental handicap - Handicap mental Intellectual - lntellectuel Intelligence: profound mental retardation - Intelligence: retard mental profond Intelligence: severe mental retardation - Intelligence: retard mental severe Intelligence: moderate mental retardation - Intelligence: retard mental moyen Intelligence: global dementia - Intelligence: demence globale Other intellectual - Autres deficiences intellectuelles Code 2. Other psychological - Autres deficiences du psychisme Other psychological - Autres deficiences du psychisme Retardation and other psychological - Retard et autres deficiences du psychisme Intermittent impairment of consciousness - Deficience intermittente de la conscience Drives: sexual performance - Pulsions: acte sexuel Drives: drug dependence - Pulsions: toxicomanie Emotion, affect and mood - Emotion, affect et humeur Other: emotion, affect and mood - Autres: emotion, affect et humeur Behaviour pattern - Deficience du comportement Unspecified: behaviour pattern - Non precisee: deficience du comportement Code 3. Language - Langage et parole Language - Deficiences du langage Severe communication impairment - Deficience severe de la communication Unspecified severe communication impairment - Deficience severe de la communication (non precisee) Voice production - Deficience vocale Voice quality - Deficience de la qualite de la voix Speech fluency - Deficience de la fluidite Code 4. Aural - Auditives Aural - Deficiences auditives Total or profound hearing loss - Perte auditive totale ou profonlile Speech and hearing - Parole et audition Deaf and/or mute - Surdite et/ou mutite Deaf and blind - Surdite et cecite Multiple: deaf and mute and blind - Multiple: surdite + mutite + cecite Total hearing loss in one ear, mild loss in other - Perte auditive totale d'une oreille, legere de l'autre Moderately severe hearing loss, one ear, other not known - Deficience auditive severe d'une oreille, non connue de l'autre ' Moderate bilateral hearing impairment - Deficience auditive moyenne bilaterale Mild bilateral hearing impairment - Deficience auditive bilaterale legere Tinnitus - Acouphenes Vestibular and balance function - Deficience de la fonction vestibulaire et de !'equilibration Code 5. Ocular - Appareil oculaire Ocular - Deficiences de l'appareil oculaire Total visual loss, both eyes - Perte totale de la vision des deux yeux Near-total visual loss: both eyes - Perte presque totale de la vision des deux yeux Moderate visual loss: both eyes - Perte moderee de la vision des deux yeux Unspecified moderate visual loss: both eyes - Perte moderee, non precisee, de la vision des deux yeux Profound visual impairment: one eye - Deficience visuelle profonde d'un mil Near-total visual loss: one eye, other not stated - Deficience visuelle presque totale d'un mil, deficience visuelle de l'autre mil non indiquee Other visual impairment - Autre deficience visuelle Other visual: colour vision - Deficience de la vision des couleurs Other vision - Autre deficience visuelle Wld hlth statist. quart .• 42 (1989) ICIDH code Code CIH 1. 1b 1 10 11 12 14.0 19 Subtotal - Total partiel 2 2.1b 21 25.4 25.6 26 26.88 29 29.9 Subtotal - Total partiel 3 30 30.9 35 36.6 37.0 Subtotal - Total partiel 4 40 40.1b 40.2" 40.3" 40.4b 44.1 45.3 45.4 45.7 47.2 48 Subtotal - Total partiel 5 51.0 a51.3 53 53.9 54 54.5 57 57.5 57.8 Subtotal - Total partiel Number of times used Nombre de fois oU le code a ete utilise 17 12 1 2 3 1 2 38 14 6 1 1 2 2 1 4 32 9 13 1 1 1 1 26 18 18 17 2 2 3 2 2 3 1 2 71 20 29 5 1 1 7 1 3 2 4 73 Percentage distributiona Distribution en pourcentage8 3.3 2.3 0.2 0.4 0.6 0.2 0.4 7.3 2.7 0.2 1.2 0.2 0.2 0.4 0.4 0.2 0.8 6.2 1.7 2.5 0.2 0.2 0.2 0.2 5.0 3.5 3.5 3.3 0.4 0.4 0.6 0.4 0.4 0.6 0.2 0.4 0.2 13.7 3.9 5.6 1.0 0.2 0.2 1.4 0.2 0.6 0.4 0.8 14.1 - 134 - TABLE 3 (continued) Detailed code of ICIDH classification - Code detaille de la classification CIH Code 6. Visceral - Autres organes Visceral - Deficiences des autres organes Cardiorespiratory function - Deficience de la fonction cardio-respiratoire Shortness of breath - Essoufflement Other breathing disturbance - Autre trouble respiratoire Other respiratory disturbance - Autre trouble de la fonction respiratoire Other respiratory disturbances - Autres troubles de la fonction respiratoire Other cardiorespiratory function - Autre deficience de la fonction cardio-respiratoi re Gastrointestinal function - Deficience de la fonction gastro-intestinale Unspecified gastrointestinal function - Deficience, non precisee, de la fonction gastro-intestinale Urinary function - Deficience de la fonction urinaire Other urinary function - Autre deficience de la fonction urinaire Reproductive function - Deficience de la fonction reproductive Other reproductive function - Autre alteration de la fonction reproductive Internal organ deficiency - Anomalie des organes internes Other internal organ deficiency - Autre anomalie des organes internes Other internal organs - Autre deficience des organes internes Other internal organs - Autre deficience des organes internes Mastication and swallowing - Deficience de la mastication et de la deglutition Olfaction and other special functions - Deficience liee a l'olfaction et aux autres fonctions specifiques Code 7. Skeletal - Squelette et appareil de soutien Skeletal - Deficience du squelette et de l'appareil de soutien Skeletal and/or motor - Deficiences du squelette, de l'appareil de soutien et/ou de la motricite Mechanical and motor of face - Deficience mecanique et motrice de la face Posture - Deficience de la statique et de la posture Unspecified posture - Deficience, non precisee, de la statique et de la posture Dwarfism - Nanisme Mechanical of limb - Deficience mecanique du membre Mixed and other upper limb: mechanical - Deficience mecanique multiple et autre du membre superieur Mixed and other mechanical of limb - Deficience mecanique multiple ou autre des membres Bilateral complete paralysis of lower limb: paraplegia - Paralysie bilaterale complete des membres inferieurs: paraplegia Unspecified spastic paralysis of more than one limb - Paralysie spastique, non precisee, de plus d'un membre Bilateral paralysis of upper limbs - Paralysie bilaterale des membres superieurs Paralysis of dominant upper limb - Paralysie du membre superieur dominant Other paralysis of lower limb - Autre paralysie du membre inferieur Paralysis of upper and lower limbs on same side - Paralysie des membres superieurs et inferieurs du meme cote Paralysis of all four limbs - Paralysie des quatre membres Other flaccid paralysis of limb - Autre paralysie avec flaccidite des membres Unspecified other paralysis of limb - Autre paralysie des membres, non specifiee Other motor of limb - Autre deficience motrice des membres Other bilateral motor of upper limbs - Autre deficience motrice bilaterale des membres superieurs Other motor of dominant upper limb - Autre deficience motrice du membre superieur dominant Other bilateral motor of lower limbs - Autre deficience motrice bilaterale des membres inferieurs Other motor of lower limb - Autre deficience motrice du membre inferieur Other motor impairment of limb: other - Autre deficience motrice: autre Unspecified other motor of limb - Autre deficience motrice, non precisee Unspecified other motor of limb: tremor NOS - Autre deficience motrice non precisee: tremblement SAi Unspecified other motor impairment of limb: limping NOS - Autre deficience motrice non precisee: claudication SAi Transverse deficiency of upper arm - Alteration transversale de la partie superieure du bras Transverse deficiency of upper arms - Alteration transversale de la partie superieure des bras Transverse deficiency of carpus - Alteration transversale du carpe Transverse deficiency of carpi - Alteration transversale des carpes Transverse deficiency of thigh - Alteration transversale de la cuisse ICIDH code Code CIH 6 61 61.0 61.1 61.11b 61.12" 61.8 62 62.9 63 63.8 64 64.9 65 65.9 66 66.8 68 69 Subtotal - Total partiel 7 7.1b 70.2 70.5 70.59 70.6 71 71.8 71.9 72.3 72.9 73.Qb 73.1 73.4 73.5 73.7 73.85 73.9 74 74.0 74.1 74.3 74.4 74.8 74.9 74.92 74.97 75.1 75.11b 75.3 75.31 75.5 TABLEAU 3 (suite) Number of times used Nombre de fois ou le code a ete utilise 5 7 3 2 1 1 5 3 1 1 1 1 1 1 1 2 3 2 42 4 7 1 8 2 1 1 6 7 7 3 2 2 2 3 2 2 12 4 3 2 2 5 20 9 2 3 1 1 Percentage distribution8 Distribution en pourcentage8 1.0 1.4 0.6 0.4 0.2 0.2 1.0 0.6 0.2 0.2 0.2 0.2 0.2 0.2 0.2 0.4 0.6 0.2 0.4 8.1 0.8 1.4 0.2 1.5 0.4 0.2 0.2 1.2 1.4 1.4 0.6 0.4 0.4 0.4 0.6 0.4 0.4 2.3 0.8 0.6 0.2 0.4 0.4 1.0 3.9 0.2 0.2 1.7 0.4 0.6 0.2 0.2 Wld hlth statist. quart., 42 (1989) - 135 - Detailed code of ICIDH classification - Code detaille de la classification CIH Transverse deficiency of lower leg - Alteration transversale de la partie inferieure de la jambe Transverse deficiency of lower legs - Alteration transversale de la partie inferieure des jambes Transverse deficiency of tarsus - Alteration transversale du tarse Transverse deficiency of tarsi - Alteration transversale des tarses Transverse deficiencies, more than one site-proximal limb parts - Alteration transversale a des endroits multiples dans les parties proximales des membres Transverse deficiency unspecified of proximal limb parts - Alteration de localisation non precisee dans les parties proximales d'un membre Other transverse deficiency of phalanges of fingers - Autre alteration transversale des phalanges des doigts Transverse deficiency of phalanges of fingers-first ray, complete - Alteration transversales des phalanges des doigts, premier axe, complete Code 8. Disfiguring - Esthetiques Deficiency in head region - Alteration au niveau de la tete Cleft palate - Bec-de-lievre Other dentofacial deficiency - Autre defaut au niveau bucco-dentaire Other disfigurement of trunk - Autre deficience esthetique du tronc Congenital deformity - Difformite congenitale Congenital deformity: disfigurement of metacarpus and hand - Difformite congenitale: metacarpe et main Congenital deformity: disfigurement of knee and leg - Difformite congenitale: genou et jambe Congenital deformity: disfigurement of ankle, foot and toe - Difformite congenital: cheville, pied et orteil Other disfigurement - Autre deficience esthetique Other and unspecified disfigurement - Autre deficience esthetique, non precisee Code 9. Generalized - Fonctions generates Generalized, sensory and other - Deficiences de fonctions generales, sensitives et autres deficiences Multiple, of all classes - Deficience multiple de tous ordres Other sensory: pain - Autre deficience sensitive: douleur Other - Autre Unspecified other - Autre, non precisee Impairment status not ascertained - Etat de deficience, non contr61e Total of impairment responses - Total des reponses relatives aux deficiences DISABILITY - INCAPACITES Code 1. Behaviour - Comportement Occupational role - lncapacite concernant les occupations Code 2. Communication Listening to speech - lncapacite d'ecouter quelqu'un parler Detailed visual tasks - lncapacite concernant la vision fine Code 3. Personal care - Soins corporels Clothing - lncapacite de mettre ses vetements Making food ready - lncapacite de preparer la nourriture Other feeding: chewing - Autre incapacite concernant !'ingestion des repas: mastication Code 4. Locomotor (mobility) - Locomotion (mobilite) locomotor - lncapacites concernant la locomotion Walking - lncapacite de marcher Climbing stairs - lncapacite de monter les escaliers Standing transfer - lncapacite de se deplacer debout Other transfer - Autre incapacite de se deplacer Lifting - lncapacite de soulever les objets Other locomotor - Autre incapacite locomotrice Code 5. Body disposition - Utilisation du corps Retrieval - lncapacite de ramasser les objets Wld hlth statist. quart., 42 (1989) ICIDH code Code CIH 75.6 75.61 75.7 75.71 75.8 75.9 76.3 76.31 Subtotal - Total partiel 80 80.4 80.5 83 84 84.03 84.06 84.07 87 87.9 Subtotal - Total partiel 9 90.0 98.3 99 99.9 0 Subtotal - Total partiel 18 23 26 35 37.3 38.2 4 40 42 46.2 46.8 48 49 52 Number of times used Nombre de fois ou le code a ete utilise 10 4 1 1 3 7 2 156 1 1 1 2 2 1 6 10 26 3 10 2 26 8 5 54 518 3 3 2 2 1 1 2 1 Percentage distribution4 Distribution en pourcentagea 1.9 0.8 0.2 0.2 0.6 1.4 0.4 0.2 30.1 0.2 0.2 0.2 0.4 0.4 0.2 0.2 0.2 1.2 1.9 5.0 0.6 1.9 0.4 5.0 1.5 1.0 10.4 100.0 10.3 3.4 3.4 3.4 3.4 3.4 10.3 6.9 6.9 3.4 3.4 6.9 3.4 3.4 - 136 - TABLE 1 (continued) Detailed code of ICIDH classification - Code detaille de la classification CIH Code 6. Dexterity - Maladresse Code 7. Situational - Revelees par certaines situations Other situational - Autre incapacite revelee par certaines situations Code 8. Particular skills - Aptitudes particulieres Code 9. Other activity restrictions - Autres restrictions d'activites Other activity restrictions - Autres restrictions d'activites Other activity restrictions: certified disabled - Autres restrictions d' activites: incapacite certifiee Other activity restrictions: partial - Autres restrictions d'activites: partielle Other activity restrictions: self-reported - Autres restrictions d'activites: declarees par le patient Total of disability responses - Total des reponses relatives aux incapacites Grand total survey screening codes (impairment and disability) - Total general des reponses ii l'enquite (deficience et incapacites) ICIDH code Code CIH 78 9 9.1b 9.:;b 9_gb TABLEAU 1 (suite) Number of times used Nombre de fois au le code a ete utilise 2 3 29 547 Percentage distributiona Distribution en pourcentagea 6.9 10.3 3.4 3.4 3.4 100.0 . . . - . Number of times this code was used • Percentage d1strobut1on of codes by type of code used. ,.e. Number of times all codes were used X 100. For example: for the 63 surveys and censuses coded into the data base. ICIDH codes were used 518 times in all. If a specific codex was used 4 times. 4 518 X 100 = percentage of all codes that were code x. Nombre de fois au ce code a ete utilise Distribution en pourcentage des codes par type de code utilise, c'est-a·dire: Nombre de fois au tousles codes ant ete utilises X 100. Par exemple: dans le cadre des 63 enquetes et recensements introduits dans la base de donnees, les codes CIH ant ete utilises 518 fois au total. Si un code particulier x a ete utilise 4 fois, 4 518 X 100 = pourcentage de codes x par rapport aux autres codes. b Not an ICIDH code, but devised to accommodate items not readily coded with ICIDH categories - Ce code n'est pas un code CIH, mais ii est destine a couvrir des deficiences difficiles a coder dans le cadre des categories CIH. Source: United Nations Disability Statistics Data Base (DISTAT, 1987), 1988. (Table 3- Tableau 3). Box 4. Suggested short list of impairments for use in survey research ICIDH Impairment categories for survey ICIDH Impairment categories for survey code screening code screening 1. 1 Intelligence-retardation (intellectual) 14. 70 Skeletal, including head and trunk 2. 2 Other psychological (mental, regions behavioural) 15. 70.5 Impairment of posture 3. 30 Severe communication impairment 16. 71 Mechanical of limb of language 17. 72.0 Paralysis of upper and lower limbs 4. 39 Other impairment of speech - one side (hemiplegia) 5. 41 Total or profound bilateral hearing 18. 72.3 Bilateral paralysis - lower limbs loss 19. 72.6 Complete paralysis of all four limbs 6. 43 Moderate bilateral hearing (tetraplegia) impairment 20. 72.9 Other paralysis 7. 49 Other aural 21. 74 Other motor impairment of limb 8. 51 Total visual loss, both eyes 22. 75 Transverse deficiency, upper (ampu- 9. 54 Profound visual impairment- tations or amputation-like stumps) one eye 23. 76 Transverse deficiency, lower (distal 10. 58 Other ocular impairment parts) 11. 61 Cardiorespiratory 24. 8 Disfigurement or congenital 12. 62 Gastrointestinal deformity 13. 69 Other visceral 25. 9 Other impairment Wld hlth statist. quart., 42 (1989) - 137 - Box 5. Suggested short list of disabilities for use in survey research IC/OH Disability categories for survey code screening 1. 10 Self-awareness (inappropriate interpretation of and response to external events, disturbance of behaviour from confusion) 2. 11 Location in time and space (memory) 3. 15 Knowledge acquisition (learning) 4. 20 Understanding speech (comprehending) 5. 21 Speaking, talking 6. 23-24 Listening (hearing) An assessment of the situation of digabled persons should cover, inter a/ia, their socioeconomic condi- tion, family and household status, access to and use of social, economic, health and welfare programmes available in the community, degree of participation in the labour force, in education programmes, use of public transport, type of transport used to get to work or school, and housing and living conditions. This assessment should differ little from the assessment of any other major population group. It is also advisable that survey specialists refer to existing recom- mendations and guidelines for population censuses and national survey programmes relating to socio- economic and demographic assessment for the gen- eral population (16-19). Assessing handicap In survey research, the concept of handicap ought to be considered as an analytical tool rather than as a classification scheme for identifying or screening people into a disability survey. According to the ICIDH, handicaps are descriptions of the cumulative loss, namely the social and economic losses that result both from the characteristics of impaired people and from characteristics of their environments. The suggested interaction between impaired people and their environments is shown diagrammatically in Fig.2. With this conceptual framework, the study of hand- icap as described in the ICIDH would be based on an analysis of economic and other opportunity loss of disabled persons that may be explained through the influence of impairments and disabilities in different environments. Thus, handicap is viewed as a result of the interaction between disabled people and their environment rather than as the result of impairments and disabilities alone, or environment alone. In order to allow such an analysis, environments must also be assessed and statistically classified. The environ- ment may be divided into factors facilitating the integration of disabled persons (independent living programme, community-based rehabilitation, modi- fied transport arrangements, positive community attitudes, media programmes) and those contribut- ing to their isolation (lack of services, negative com- munity attitudes, inadequate housing arrangements, occupational limitations). A list of recommended tabulations of surveys and censuses is also needed for comparing disabled people (by type of impair- ment or disability) and their environments (by type of environmental characteristics), in order that hand- Wld hlth statist. quart., 42 (1989) IC/OH Disability categories for survey code screening 7. 25-27 Seeing 8. 30 Controlled excretory difficulty 9. 4 Locomotion (mobility) 10. 40 Walking 11. 42 Climbing stairs 12. 52-57 Body movement (reaching, crouching, kneeling) 13. 62-66 Dexterity (fingering, gripping, holding) 14. 9 Other disability icap may be estimated through assessment of social and economic loss (20). The level of handicap (as a product of both a disabled person's characteristics and the char- acteristics of his/her environment) is often measured in survey research through comparisons of personal and family income, occupational status, educational attainment, participation in social activities, etc., of disabled persons with those of other population groups. Handicap is thus a relative term reflecting an estimation of the difference between the situation of disabled people socioeconomically and culturally as compared to the situation of non-disabled people in similar environments, through an assessment of such topics as availability of public transport, ac- cessibility of buildings, availability of programmes and services, sporting opportunities, employment opportunities, etc. Thus, the study of handicap re- quires data on total population characteristics for comparative purposea and as part of the description of disabled persons' environments. DISTAT provides an opportunity to begin testing the soundness of estimating handicap through such an interaction term, with existing concepts and variables. It can also be used to classify the types of handicap that may be expected, i.e. economic, social, occupational, educational, etc. Conclusions A review of the national statistics collected and ana- lysed in the framework of DISTAT indicates that there is a wide degree of variation in the crude disability rates of populations. These extreme variations can largely be explained by the differences in the def- initions used to describe disability in surveys as well as to variations in survey design. Even under these less-than-perfect conditions, it appears that relation- ships within data sets are relatively stable: poverty, low life expectancy, old age, low socloeconomic status in general, and low occupational status, are associated with high rates of disability. In general, disability-based screening in surveys re- sults in higher crude disability rates than does im- pairment-based screening. Disability, as a screening question, embraces a wider range of behaviour and activities, even when the interviewer is referring to specific disabilities. Responses to questions about impairment, however, require knowledge by respon- dents of specific functional loss or abnormality of anatomical structure. The higher degree of specifi- - 138 - city in impairment-based surveys for screening people for disability results in a lower proportion of disabled persons being screened into the survey. This contributes to the observation that crude dis- ability rates are higher in developed countries than in developing countries in so far as developing countries are generally more impairment-oriented in their screening techniques and developed countries are more disability-oriented. The most reasonable survey strategy seems to be to use disability ques- tions as survey screens, and then follow up with impairment-specific questions during the survey in- terview. In addition to the need for a strategy for screening people for disability that allows for easier intercountry comparisons, coding categories of impairments and disabilities also need to be standardized. The ICIDH, which was used in DISTAT, worked reasonably well as a repository for organizing impairment and disability categories formulated in national surveys for screen- ing disabled people into the study, although further modification and simplification are required. The distinction between impairments and disabilities on the one hand, and handicap on the other, appears to be largely analytical. People are identified as dis- abled through the descriptions and classification of their impairments and disabilities. Once they have been identified, an analysis of their situation, con- trolling for external environmental factors such as types of transport systems, unemployment, housing, community attitudes towards disablement, etc., re- sults in an estimate of handicap. Handicap is the study of the expected loss of income, socioeconomic status, educational attainment, etc., explained by the fact of being disabled while living within a particular environ- ment. In this respect, handicap is not a useful screen- ing device for identifying disabled persons in a survey interview; it is, however, a useful analytical approach for assessing various dimensions of opportunity loss. The need for statistical guidelines and recom- mendations for national household surveys has be- come obvious. The consolidation into one data-base system of existing national statistics by the United Nations Statistical Office highlights this need. The study of disability, for example, would benefit from assessment of national strategies of data collection that would screen through the use of techniques that begin by broadly asking about disability, and follow up with more detailed impairment questions. A short list of impairments and disabilities following the ICIDH conceptual guidelines is proposed for consideration. Production of cross-tabulations of disability statistics should include basic demographic information on age, sex and residence by type of disability and/or impairment, as well as additional statistics of a socio- economic nature, in order to enable international monitoring as envisioned in the World Programme of Action concerning Disabled Persons and encourage the recognition of disabled persons as citizens in their own right. If the international monitoring of disability statistics continues as anticipated during the 1990 population census rounds, and is supplemented by findings from national household-survey programmes and back- stopped by civil registration systems assessing dis- ablement, the scientific study of disablement can be expected to gradually involve many more countries. It should also be interdisciplinary in nature; provide an interviewing strategy for surveys that is based upon an international commitment to community discus- sion of disablement; result in improved reporting of the underlying causes of disablement; describe more accurately some of the obstacles confronted by dis- abled persons and their families; and form the basis for increased understanding, resulting in policies and programmes relating to the long-term consequences of loss or abnormality of psychological, physiological, or anatomical structure or function (9). SUMMARY This article examines international statistical guide- lines and recommendations relevant to the collection and analysis of disability data in population census, household survey and civil registration programmes. It also gives examples of survey design methods and their influence on findings of disability surveys. These examples are taken from the results of popu- lation censuses, household surveys and registration systems of 55 countries, as compiled in the United Nations Disability Statistics Data Base (DISTAT, 1988). Comparisons of crude disability rates, defined as the percentage of the total population that is disabled, indicate considerable variation in the rates both within and across the major data-collection types. Cross-national variations in disability rates are not only due to actual differences in disability rates, but are also the result of differences in survey design, the statistical concepts and definitions and the survey screening devices used. This article prov- ides the reader with specific examples of screening devices tried and topics covered in survey pro- grammes, and reviews the potential for using the ICIDH as one way of standardizing survey results. Short lists of impairments and disabilities for survey research are proposed. Survey implementation of the study of handicap is also discussed, and a list of possible survey topics for the study of handicap is outlined. RESUME Methodes d'enquete sur l'incapacite Les directives et recommandations internationales concernant la collecte et !'analyse statistique des donnees sur les incapacites dans les recensements de population, les enquetes sur les menages et l'enregistrement des actes d'etat-civil sont passees en revue dans cet article qui donne des exemples des methodes d'enquete possibles et de leurs conse- quences sur les resultats obtenus. Ces exemples s'appuient sur des elements d'information provenant de recensements demographiques, d'enquetes sur Wld hlth statist. quart., 42 (1989) - 139 - les manages et de dossiers de l'etat-civil de 55 pays, consignes dans la base de donnees statistiques des Nations Unies sur l'incapacite (United Nations Dis- ability Statistics Data Base (DISTAT), 1988). Les com- paraisons des taux bruts d'incapacite, definis comme etant le pourcentage des individus frappes d'incapa- cite dans la population totale, peuvent faire appa- raitre des variations considerables d'une methode a l'autre de collecte des donnees, et meme si l'on s'en tient a une seule et unique methode. Les variations transnationales des taux d'incapacite ne sont pas seulement dues a des differences reelles dans ces taux; elles resultent aussi de differences dans la conception meme de l'enquete, dans les principes et definitions statistiques adoptees et dans les modes de depistage appliques. Le lecteur trouvera dans cet article des exemples precis de systemes de depis- tage experimentes et de sujets couverts dans les enquetes, ainsi qu'une etude des possibilites d'utili- sation de la CIH comme moyen de normaliser les resultats. Des listes succinctes de deficiences et d'in- capacites sont proposees a des fins de recherches. Les modalites d'execution d'une etude sur les han- dicaps sont egalement examines et une serie de themes possibles pour cette etude est esquissee. FIG.2 HANDICAP EXPLICABLE PAR UNE INTERACTION ENTRE LA PERSONNE A TTEINTE D'INCAPACITES ET L'ENVIRONNEMENT PERSONNE ATIEINTE O'INCAPACITES Deficiences lncapacites Age, sexe CoMMUNAlln (ENVIRONNEMENT! Taux de chomage Niveaux d'analphabetisme Niveaux de pauvrete Systemes de transport disponibles Cadre juridique existant Organisation des soins de sante Systeme de sante publique Systeme de protection sociale et economique Mode de formation des manages et des families Structure de la consommation Wld hlth statist. quart., 42 (1989) Caracteristiques du logement Normes et attitudes HANDICAP Activite economique Generation de revenu Emploi Mobilite professionnelle Participation sociale Participation politique Loisirs, sports et culture Type de transport utilise Etat de nutrition Scolarisatfon Niveau d'instruction Conditions de vie - 140 - REFERENCES- REFERENCES 1. STATISTICS CANADA. 1986 Census of Canada. Ottawa, Statistics Canada, 1986. (Form 28 Ques- tion 20). ' 2. S_TATISTICS CANADA. The Health and Activity Limita- tion Survey-selected data for Canada, provinces and territories. Ottawa, Statistics Canada 1988. (Disability Database Program). ' 3. STATISTICS CANADA. Health and activity limitation survey form (adults 15 and over)-for Northern areas. Ottawa, Statistics Canada, 1988. (Interview form 04). 4. STATE STATISTICAL BUREAU. Press communique about principal data of the National Sampling Sl!rvey of Handicapped in China. Beijing, Com- mittee of National Sampling Survey of the Hand- icapped, 1987. 5. UNITED NATIONS. Development of statistics of dis- abled persons-case studies. New York, Depart- ment of International Economic and Social Affairs, Statistical Office, 1986. (ST/ESA/STAT/ Ser.YI 2). 6. HABER, L. Issues in the definition of disability and the use of disability survey data. Workshop on disability statistics of the Committee on National Statistics. Washington, D.C., National Research Council, 1989. 7. UNITED NATIONS. World Programme of Action con- cerning Disabled Persons-United Nations De- cade of Disabled Persons, 1983-1992. New York United Nations, 1982. (Resolution 37/52, doc~ ument A/37/51, supplement No. 51). 8. L!NITED NATIONS. United Nations Disability Statis- tics Data Base, 1975-1986-technical manual. New York, Department of International Economic and Social Affairs, Statistical Office, 1988. 9. WORLD HEALTH ORGANIZATION. International Classifi- cation of Impairments, Disabilities, and Hand- icaps-a manual of classification relating to the consequences of disease. Geneva, WHO, 1980. ORGANISATION MONDIALE DE LA SANTE. Classification internationale des handicaps: deficiences, inca- pacites et desavantages - un manue/ de classifi- cation des consequences des maladies. Paris, CTNERHI-INSERM, 1988. 10. CHAMIE, M. Methods and objectives for develop- ment of data bases on disabled persons. New York, United Nations, Department of Inter- national Economic and Social Affairs, Statistical Office/ Centre for Social Development and Hum- anitarian Affairs, 1985. 11. BROWN, S. C. Disability prevalence by age and sex in selected populations of Asia and Africa. Chicago, Population Association of America/ Gal- laudet University, 1987. 12. CHAMIE, M. Use of population censuses and household surveys for monitoring disability. Pro- ceedings of the Demography Workshop. Inter- national workshop on research and development priorities in disability statistics and demography. Ottawa, National Research Council of Canada, 1986. (NRCC No. 27424). 13. CHAMIE, M. The census as a source of statistics on women and other special population groups. Cairo international conference on dissemination and use of census data. New York, United Na- tions, Department of International Economic and Social Affairs, Statistical Office, 1988. 14. UNITED NATIONS. Development of statistics for monitoring the implementation of the World Programme of Action concerning Disabled Per- sons, 1983-1992, and illustrative statistics and information on sources from the United Nations Disability Data Base. New York, Department of International Economic and Social Affairs, Sta- tistical Office, 1987. 15. ICIDH INTERNATIONAL NETWORK. Consultation - Pro- posal for revision of the third level of the IC/OH: the handicap. Quebec, Canadian Society for the ICIDH/ Quebec Committee on the ICIDH, 1989. (Vol. 2, No 1, Special issue). RESEAU INTERNATIONAL CIDIH. Consultation- Proposition d'une revision du 3" niveau de la CIDIH: le handicap. Quebec, Societe canadienne de la CIDIH/Comite quebecois sur la CIDIH, 1989. (Vol. 2, No. 1, Numero special). 16. UNITED NATIONS. Towards a system of social and demographic statistics. New York, Department of Economic and Social Affairs, Statistical Office, 1975. (ST/ESA/STAT/SER.F/18). 17. UNITED NATIONS. Social indicators: preliminary guidelines and illustrative series. New York, Department of Economic and Social Affairs, Sta- tistical Office, 1978. (Series M, No. 63 - sales no. E.78.XVll.8). 18. UNITED NATIONS. Principles and recommendations for population and housing censuses. New York, Department of Economic and Social Affairs, Sta- tistical Office, 1980. (ST/ESA/STAT/SER.M/67). 19. UNITED NATIONS. Handbook of household surveys. New York, Department of Economic and Social Affairs, Statistical Office, 1984. (ST/ESA/STAT/ SER.F/31) (Revised edition). 20. UNITED NATIONS. Report of the expert group on development of statistics on disabled persons. New York, Department of International Economic and Social Affairs, Statistical Office, 1984. (ESA/ STAT/AC.1817). 21. NATIONAL INSTITUTE OF STATISTICS. [Survey on dis- abilities, impairments and handicaps]. Madrid, National Institute of Statistics, 1987. (Vais I & II, 1986). (In Spanish). INSTITUT NATIONAL DE STATISTIOUE. [Enquete sur les incapacites, /es deficiences et les desavantages]. Madrid, lnstitut national de statistique, 1987. (Vol. I & II, 1986). (En espagnol). 22. MARTIN, J. ET AL The prevalence of disability among adults. OPCS surveys of disability in Great Britain, Report 1. London, HMSO, 1988. Wld hlth statist. quart., 42 (19891 - 141 - ESTIMATION DE LA VALEUR DE L'ESPERANCE DE VIE SANS INCAPACITE (EVSI) POUR LES PAYS OCCIDENTAUXAU COURS DE LA DERNIERE DECENNIE QUELLE PEUT ETRE L'UTILITE DE CE NOUVEL INDICATEUR DE L'ETAT DE SANTE? Jean-Marie Robinea L'esperance de vie sans incapacite (EVSI) est un indicateur de l'etat de sante des populations qui s'appuie a la fois sur la mesure de la mortalite et sur celle de l'incapacite. II a ete propose dans le but de constituer des series chronologiques sur l'etat de sante afin de savoir dans quelle mesure les gains d'esperance de vie sont des annees de bonne sante (1). En effet, la chute importante de la mortalite au cours des 15 dernieres annees, particulierement aux ages eleves, n'avait pas ete prevue et, en !'absence d'in- formations sur la qualite des annees ainsi gagnees, cette evolution demo-epidemiologique inquiete. Beaucoup se demandent si l'on n'echappe aux mala- dies cardiaques, par exemple, que pour vivre en mauvaise sante (2). Plusieurs theories s'affron- tent (3): • les «optimistesl) pensent que les maladies chroni- ques et les incapacites vont etre repoussees aux ages les plus eleves de la vie, ce qui entrainera une «compression de la morbiditell, selon Fries (4, 5), compte tenu d'une hypothese de pla- fonnement de la croissance de l'esperance de vie. Mais cette hypothese est fortement contestee par ailleurs (6); • a l'oppose, les «pessimistes» pensent que la di- minution de la mortalite ne s'accompagnera pas d'une baisse de la morbidite (7), ce qui fait crain- dre a Kramer une «pandemie des troubles men- taux et des maladies chroniquesl) (8); • entre ces deux extremes, une troisieme theorie relie !'evolution de la mortalite et de la morbidite en une sorte d'equilibre (3), tandis que d'autres se situent a mi-chemin entre la pandemie et l'equilibre (1). La notion d'esperance de vie sans incapacite offre un cadre conceptuel permettant de clarifier le debat au niveau de la morbidite fonctionnelle (9), car si l'espe- rance de vie sans incapacite croit mains vite que l'esperance de vie, ii y a «pandemiell des incapaci- tes; aussi vite, .ii y a «equilibrel); plus vite, ii y a «compression)). Ces trois cas correspondent a des deplacements relatifs differents des courbes de sur- vie du modele mortalite/incapacite/morbidite propo- se par l'OMS et represente a la figure 1 (10). Materiel et methodes Le principe de l'esperance de vie sans incapacite a ete expose par Sanders des 1964 (11), mais ce n'est • Demographe Epidemiologiste, lnstitut national de la sante et de la recherche medicale (INSERM), Montpellier, France. b Pour effectuer ce calcul, on doit d'abord exprimer l'incapacite provisoire en annees-personnes en ponderant les taux de prevalen- ce par la duree moyenne de l'incapacite. c D'autres calculs ont ate effectues pour le Japan de 1965 ii 1979 par Koizumi mais la methode utilisee n'est pas precisee (25). Rapp. trimest. statist. sanit. mond., 42 ( 1989) qu'au debut des annees 70 que Sullivan a presente une methode simple permettant d'estimer l'esperan- ce de vie selon differents etats de capacite fonction- nelle (12). Celle-ci consiste a utiliser les taux d'insti- tutionnalisation (fournis generalement par le recen- sement) et les taux de prevalence de la restriction permanente ou provisoire de l'activite (provenant d'enquetes nationales de sante) pour qualifier les annees vecues aux differents ages. Le calcul est le suivant: a partir d'une table de mortalite, on calcule le nombre d'annee vecues entre chaque age. Puis on deduit les annees d'incapacite en utilisant les taux de prevalence fournis par les enquetes transversales de sante.b On estime ainsi le nombre d'annees vecues sans incapacite. II suffit alors de cumuler ces annees a partir d'un age x quelconque et de rapporter le total obtenu a l'effectif des survivants a cet age pour obtenir une estimation de l'esperance de vie sans incapacite a l'age x (13). Un exemple de calcul est presente en annexe. Les premieres estimations d'esperance de vie sans incapacite, publiees en 1969 (14), ont souleve beau- coup d'interet car on craignait, au debut des annees 70, que la croissance economique ne grave la qualite de la vie. Toutefois, ii a fallu attendre 1980 pour que de nouveaux calculs soient entrepris (15). On consta- te alors qu'entre 1966 et 1976, les gains d'esperance de vie aux Etats-Unis d'Amerique sont presque en- tierement reperdus par !'augmentation du nombre d'annees passees en incapacite. Ces observations seront suivies par toute une serie de travaux portant, soit sur !'evolution de l'incapacite (16, 17), soit sur le calcul de l'esperance de vie sans incapacite en utili- sant la methode de Sullivan et des donnees d'enque- tes transversales de sante: au Canada (18) et dans les provinces du Quebec (19, 20) et du Nouveau- Brunswick (21), en France (13), en Angleterre et Galles (22), aux Pays-Bas (23) et aux Etats-Unis (24).c Resultats Ces calculs ont apporte de nombreux resultats dont les principaux concernent !'estimation de la duree moyenne de vie vecue en bonne sante, les differen- ces selon le sexe, le poids de l'incapacite dans l'esperance de vie, les inegalites sociales face a la sante et !'importance relative des differentes causes de mauvaise sante. La duree moyenne de vie en bonne sante En s'appuyant sur les etudes les plus recentes (Tableau 1) effectuees dans differents pays ou re- gions du monde occidental, on peut estimer l'EVSI a la naissance autour de 59 ans pour les hommes au cours de la derniere decennie (56-64 ans) et autour de 63 ans pour les femmes (58-69 ans). - 142 - FIG.1 THE OBSERVED MORTALITY AND HYPOTHETICAL MORBIDITY AND DISABILITY SURVIVAL CURVES FOR FEMALES IN THE UNITED STATES OF AMERICA IN 1980 COURBES DE SURVIE OBSERVEE A LA MORTALITE ET DE SURVIE HYPOTHETIOUE A LA MORBIDITE ET A L'INCAPACITE CHEZ LES FEMMES AUX ETATS·UNIS D'AMERIQUE EN 1980 100 ~ ---------AZ'PT: ___ _ -·..:..::.:::.:.,····:':'.':----- _ Disability-lncapacit0 .-.- .... ::.:.··········· ---............ -;) 90 "' E ........... , ••••••• ...... Mortality - Mortalite .............. , ······ .................. ~ " 80 > -~ ', ··... ', :, "' 70 .. ' · .. Morbidity- Morbidite ' •••• ', ...___/', ··.. \ .,, c: 0 60 ·1: 0 0. e so 0.. I l 40 O> c: ·;; 30 '2 :, "' 20 c:0 ·1: 0 10 0. 0 .t 0 10 20 30 40 so e ** and e ** are the number of years of autonomous life expected at birth and at age•6o, respectively. M •• is the age to which 50% of females could expect to survive without loss or autonomy. Le poids de l'incapacite dans l'esperance de vie La part des annees d'incapacite au sein de l'esperan- ce de vie varie de 11% a 21% pour le sexe masculin et de 14% a 27% pour le sexe feminin. Le tableau 1 montre que, selon les pays et les annees du calcul, l'esperance de vie en bonne sante atteint 79-89% de la duree de la vie vecue chez les hommes et 73-86% chez les femmes. 60 Age ' ·. \ ' ··... \ ', ··· ... \ ' \ " \ \ ' \ ' \ \ ' ' ' . ' ' · .. \ ' ·. \ ,,·· .. \ ,· .. \ ':.: . .-.~ ....... , ........ ..::,,.._ M .. 50 80 I•• e,o 90 100 110 M'IIO 14576 e ** et e ** indiquent le nombre d'annees de vie autonome prevue respectiveffient a la naissance et a 60 ans. M ** indique l'Age que 50% des femmes peuvent esperer atteindre sans perte d'a°utonomie. Les differences d'esperance de vie en bonne sante selon le sexe Taus les calculs, depuis celui de Sullivan, ant mon- tre qu'une plus grande partie de l'esperance de vie feminine est vecue en incapacite, si bien que l'espe- rance de vie sans incapacite a la naissance de ces dernieres ne depasse celle des hommes que de 3, 5 ans environ (en fait de mains 1,4 an a plus 5 ans TABLE 1. DISABILITY-FREE LIFE EXPECTANCY (DFLEI - MOST RECENT VALUE FOR EACH COUNTRY OR REGION IN WHICH THE FIGURE HAS BEEN CALCULATED BY THE SULLIVAN METHOD TABLEAU 1. ESPERANCE DE VIE SANS INCAPACITE (EVSII - VALEUR LA PLUS RECENTE POUR CHAOUE PAYS OU REGION OU LE CALCUL A ETE FAIT EN UTILISANT LA METHODE DE SULLIVAN Males - Sexe masculin Females - Sexe f8minin Country/region - Pays/region OF LE/LE OFLE/LE LE" DFLE EVSI/EV LE• DFLE EVSI/EV {reference - reference) ev• EVSI % EV' EVSI % Canada, 1978 ( 18) 70.8 59.2 83.6 78.3 62.8 80.2 New Brunswick, end 1970 - Nouveau-Brunswick, fin 1970 (21) 70.0 56.7 81.0 78.1 61.1 78.2 United States - Etats-Unis, 1980 (24) 70.1 55.5 79.2 77.6 60.4 77.8 France, 1982 ( 13) 70.7 61.9 87.6 78.9 67.2 85.2 Netherlands - Pays-Bas, 1981-1985 (231 Method ,b_ Methode 1b 72.8 59.3 81.5 79.5 57.9 72.8 Method 2c - Methode 2c 72.8 58.7 80.6 79.5 60.6 76.2 England & Wales - Angleterre et Galles, 1985 (22) 71.8 58.7 81.8 77.7 61.5 79.2 Quebec, 1987 (20) 72.1 64.0 88.8 79.5 68.7 86.4 a Life expectancy - Esperance de vie. b Method 1: use of data on short-and long-term activity restrictions- M0thode 1: utilisation de donn0es sur les limitations d'activite a court et a long terme. c Method 2: use of data on perceived health status - Methode 2: utilisation de donnees sur l'etat de sante per9u. Rapp. trimest. statist. sanit. mond., 42 (1989) - 143 - selon les pays), soit, exprime en pourcentage de l'esperance de vie sans incapacite des hommes, de 6% environ seulement (de mains 2,4% a plus 9% selon les pays) alors que l'esperance de vie a la naissance des femmes depasse celle des hommes de 6-8 ans (soit de 8% a 12%) (Tableau 2). Le calcul de l'esperance de vie sans incapacite reduit done l'ecart d'esperance de vie entre les sexes, tel qu'il apparait lorsque l'on ne prend en compte que la mortalite. Cet ecart est meme inverse dans le cas des Pays-Bas puisque l'esperance de vie sans inca- pacite a la naissance est estimee en 1981-1985 a 59 ans chez les hommes contre 58 ans chez les femmes.d Les personnes agees Le tableau 3 indique la duree moyenne de vie vecue en bonne sante chez la population agee de 65 ans et d Estimations fournies par la methode 1: dans les calculs neerlan· dais on distingue deux methodes, avec la methode 1 on utilise des donnees sur les limitations d'activite ii court et long termes alors qu'avec la methode 2 on utilise des donnees sur l'etat de sante perQu (23). plus ainsi que le poids de l'incapacite dans l'espe- rance de vie au-dela de cet age pour les memes pays ou regions. On peut estimer l'EVSI a 65 ans entre 8 et 11 ans pour les hommes et entre 9 et 12 ans pour les femmes. En termes d'esperance de vie sans incapacite, l'ecart entre les sexes a 65 ans apparait encore plus reduit. Les inegalites sociales face a la sante Le calcul de l'esperance de vie sans incapacite, par contre, accroit considerablement l'ecart d'esperance de vie observe entre les groupes sociaux lorsque l'on ne prend en compte que la mortalite. II precise les inegalites face a la sante particulierement pour le sexe feminin pour qui le differential de mortalite, entre les groupes sociaux, est faible. Ainsi Wilkins & Adams ant montre, pour le Canada a la fin des annees 70, que l'ecart d'esperance de vie sans inca- pacite atteint pres de 8 ans pour le sexe feminin entre les groupes sociaux extremes alors que l'ecart d'esperance de vie n'est plus que de 3 ans. Le tableau 4 montre que cet ecart atteint 14 ans chez les hommes, alors que la difference d'esperance de vie n'est que de 16 ans (18). TABLE 2. DIFFERENCES IN LIFE EXPECTANCY (LEI AND DISABILITY-FREE LIFE EXPECTANCY (DFLEI BETWEEN THE SEXES EXPRESSED IN YEARS AND AS A PERCENTAGE OF MALE LIFE EXPECTANCY FOR EACH COUNTRY OR REGION IN WHICH THE FIGURE HAS BEEN CALCULATED BY THE SULLIVAN METHOD TABLEAU 2. ECARTS D'ESPERANCE DE VIE (EV) ET D'ESPERANCE DE VIE SANS INCAPACITE (EVSI) ENTRE LES SEXES, EXPRIMES EN ANNEES ET EN POURCENTAGE DE L'ESPERANCE DE VIE DES HOMMES, POUR CHAQUE PAYS OU REGION OU LE CALCUL A ETE FAIT EN UTILISANT LA METHODE DE SULLIVAN Difference in LE - Ecarts d'EV Difference in DFLE - Ecarts d'EVSI Country/region - Pays/region Years Years (reference - reference) Annees % Annees % Canada, 1978 ( 18) 7.5 10.6 3.6 6.1 New Brunswick, end 1970 - Nouveau-Brunswick, fin 1970 (21) 8.1 11.6 4.4 7.8 United States - Etats-Unis, 1980 (24) 7.5 10.7 4.9 8.8 France, 1982 ( 13) 8.2 11.6 5.3 8.6 Netherlands - Pays-Bas, 1981-1985 (23) Method 1• - Methode 1• 6.7 9.2 -1.4 -2.4 Method 2b - Methode 2b 6.7 9.2 1.9 3.2 England & Wales - Angleterre et Galles, 1985 (22) 5.9 8.2 2.8 4.8 Quebec, 1987 (20) 7.4 10.3 4.7 7.3 a Method 1: use of data on short-and long-term activity restrictions -Methode 1: utilisation de donnees sur les limitations d'activite a court et a long terme. O Method 2: use of data on perceived health status - Methode 2: utilisation de donnees sur l'etat de sante per~u. TABLE 3. DISABILITY-FREE LIFE EXPECTANCY (DFLEI AT AGE 65 - MOST RECENT VALUE FOR EACH COUNTRY OR REGION IN WHICH THE FIGURE HAS BEEN CALCULATED BY THE SULLIVAN METHOD TABLEAU 3. ESPERANCE DE VIE SANS INCAPACITE (EVSII A 65 ANS - VALEUR LA PLUS RECENTE POUR CHAQUE PAYS OU REGION OU LE CALCUL A ETE FAIT EN UTILISANT LA METHODE DE SULLIVAN Males Females Difference between sexes Sexe masculin Sexe feminin Ecart entre les sexes Country/region - Pays/region LE" DFLE DFLE/LE LE" DFLE DFLE/LE LE" DFLE EV" EVSI EVSI/EV Ev• EVSI EVSI/EV Ev• EVSI (reference - reference) % % Years - Annees Canada, 1978 ( 18) 14.4 8.2 56.9 18.7 9.9 52.9 4.3 1.7 New Brunswick, end 1970 - Nouveau-Brunswick, fin 1970 (21) 14.5 6.7 46.2 18.6 10.1 54.3 4.1 3.4 United States - Etats-Unis, 1980 (241 14.2 6.6 46.5 18.4 8.9 48.4 4.2 2.3 France, 1982 ( 13) 14.3 9.1 63.6 18.5 9.9 53.5 4.2 0.8 Netherlands - Pays-Bas, 1981-1985 (23) Method lb - Methode lb 14.0 7.9 56.4 18.6 6.8 36.6 4.6 -1.1 Method 2c - Methode 2c 14.0 8.1 57.9 18.6 9.1 48.9 4.6 1.0 England & Wales - Angleterre et Galles, 1985 (22) 13.4 7.7 57.5 17.5 8.9 50.9 4.1 1.2 Quebec, 1987 (201 14.2 10.6 74.6 18.9 12.2 64.6 4.7 1.6 O Life expectancy - Esperance de vie. ~ Method 1: use of data on short-and long-term activity restrictions- M0thode 1: utilisation de donnees sur les limitations d'activite a court et a long terme. " Method 2: use of data on perceived health status - M0thode 2: utilisation de donnees sur 1'0tat de sante perQ:u. Rapp. trimest. statist. sanit. mond., 42 ( 1989) - 144 - TABLE 4. DIFFERENCES IN LIFE EXPECTANCY (LEI AND DISABILITY-FREE LIFE EXPECTANCY (DFLEI BETWEEN THE WEALTHIEST AND THE POOREST INCOME QUINTILES, CANADA, END OF 19705 TABLEAU 4. DIFFERENCES D'ESPERANCE DE VIE (EVI ET D'ESPERANCE DE VIE SANS INCAPACITE (EVSI) ENTRE LES GROUPES SOCIAUX LES PLUS PAUVRES ET LES PLUS RICHES, CANADA, FIN DES ANNEES 70 Males - Sexe masculin 20% poorest - Les 20% les plus pauvres 20% wealthiest - Les 20% les plus riches Difference · Difference Females - Sexe feminin 20% poorest - Les 20% les plus pauvres 20% wealthiest - Les 20% les plus riches Difference - Difference Source: Reference ( 18) - Reference ( 18). L 'importance relative des causes de mauvaise sante Par rapport au calcul des gains attendus d'esperance de vie par suppression des differentes causes de mortalite, le calcul des gains attendus d'EVSI par suppression des differentes causes de mortalite et d'incapacite modifie le classement des domaines pathologiques dans l'origine de la mauvaise sante (19, 26). L'importance des annees d'incapacite d'origine accidentelle ou osteo-articulaire est telle que les gains attendus en annees sans incapacite par suppression des troubles locomoteurs sont plus grands que les gains attendus par suppression des tumeurs malignes qui sont pourtant au deuxieme rang de la mortalite (Tableau 5). LE-EV Years - Annees 67.1 73.4 6.3 76.6 79.4 2.8 DFLE - EVSI DFLE/LE - EVSI/EV Years - Annees % 50.0 64.3 14.3 59.9 67.5 7.6 74.5 87.6 78.2 85.0 L'evolution de l'esperance de vie sans incapacite au cours du temps Pour !'instant, ii existe tres peu de series chronologi- ques d'EVSI calculees, pour un pays ou une region, avec des methodes identiques et des donnees stric- tement comparables. Des calculs ant ete effectues pour les Etats-Unis de 1958 a 1966, de 1966 a 1976, en 1970 et en 1980. La premiere serie, de 1958 a 1966, montre une legere progression de l'esperance de vie sans incapacite alors que l'esperance de vie stagne (14). La deuxieme serie, qui utilise une defini- · tion elargie de l'incapacite, montre !'inverse pour la decennie suivante, a savoir une stagnation de l'EVSI de 1966 a 1976 (15). Les derniers calculs effectues TABLE 5. WEIGHT OF DIFFERENT CAUSES OF ILL-HEALTH (DISABILITY AND MORTALITY) EXPRESSED IN YEARS, BOTH SEXES COMBINED, UNITED STATES OF AMERICA, 1974• TABLEAU 5. POIDS DES DIFFERENTES CAUSES DE MAUVAISE SANTE (INCAPACITE ET MORTALITEI EXPRIME EN ANNEES, LES DEUX SEXES REUNIS, ETATS-UNIS D'AMERIQUE, 1974• Causes Circulatory system (including heart disease and hypertension) - Systeme circulatoire (maladies du c<Eur et hypertension inclus) Locomotor disorders (including osteoarticular and neurological disorders) - Troubles locomoteurs (troubles osteo-articulaires et troubles neurologiques inclus) Respiratory disorders - Troubles respiratoires Malignant neoplasms - Tumeurs malignes Accidents (excluding suicide) - Accidents (suicides exclus) Auditory and visual impairments - Deficiences auditives et visuelles Mental disorders (including suicide) - Troubles mentaux (suicides inclus) Diabetes - Diabetes Perinatal mortality - Mortalite perinatale Infectious diseases (including tuberculosis) - Maladies infectieuses (tuberculose incluse) Restriction of activity Restriction d'activite (Short term (Long term Court terme) Long terme) Weight in years Rank Poids en annees Rang 4.2 2 0.1 5.0 1 0.8 1.4 3 0.3 8 0.4 7 1.1 4 ? 0.6 6 0.7 5 0.2 0.0 9 Mortality - Mortalite Total Weight Weight in years Rank in years Rank Po ids Rang Poids Rang en annees en annees 4.1 8.3 0.2 7 5.3 2 0.5 5 2.7 3 1.7 2 2.0 4 1.5 3 1.9 5 1.1 6 0.4 6 1.0 7 0.2 7 0.9 8 0.7 4 0.7 9 0.1 9 0.3 10 • The weight of the different causes is expressed in the number of years of disability-free life expectancy which would be gained by the total elimination of activity restrictions and of mortality from each of the causes studied - Le poids des differentes causes est exprime en nombre d'annees d'esperance de vie sans incapacite qui pourraient etre gagnees par !'elimination totale de la restriction d'activite et de la mortalite dues a chacune des causes etudi0es. Source: Reference (26) - Reference (26). Rapp. trimest. statist. sanit. mond., 42 (1989) - 145 - montrent que, bien que l'esperance de vie a la naissance ait crO de 3, 1 ans chez les hommes et de 3,0 ans chez les femmes entre 1970 et 1980, l'EVSI n'a augmente que de 0,7 ans chez les hommes et a stagne chez les femmes (24). La part des annees vecues sans incapacite au sein de l'esperance de vie semble done avoir diminue aux Etats-Unis (Tableau 6). La serie la plus recente a ete calculee, par Bebbing- ton, pour l'Angleterre et le pays de Galles de 1976 a 1985 (22). Les resultats figurent egalement au tableau 6. Chez les hommes l'esperance de vie sans incapacite augmente mains vite de 1976 a 1985 (+ 0,5 annee) que l'esperance de vie (+ 1,8 annee), si bien que la part des annees vecues sans incapacite au sein de l'esperance de vie diminue, passant de 83,1% a 81,8%. Chez les femmes, l'esperance de vie sans incapacite stagne, diminuant de 61,7 ans en 1976 a 60,6 ans en 1981 puis remontant a 61,5 ans en 1985, alors que dans le meme temps l'esperance de vie augmente de 1,6 an, si bien que la part des annees vecues sans incapacite au sein de l'esperan- ce de vie diminue encore plus fortement, passant de 81, 1% a 79,2%. Les series calculees pour l'Angleterre et le pays de Galles de 1976 a 1985 et pour les Etats-Unis de 1966 a 1976 suggerent, comme les deux calculs effectues egalement pour les Etats-Unis en 1970 et en 1980, que l'EVSI stagne au s'accroit beaucoup mains vite que l'esperance de vie. La plupart des annees d'es- perance de vie gagnees seraient des annees d'inca- pacite. Ces resultats sont en faveur de la theorie de la «pandemie» des incapacites fonctionnelles. Sur la figure 1, cette situation correspond au cas au seule la courbe de survie mortalite se deplace vers la droite, augmentant ainsi la surface qui represente les annees vecues en incapacite et qui est comprise entre les courbes mortalite et incapacite. Toutefois, Peron & Strohmenger notent que l'esperance de vie sans incapacite observee au Canada en 1978 est egale a l'esperance de vie du moment de 1931, ce qui implique que l'esperance de vie sans incapacite ait augmente sur cette periode (27). En effet, sauf si on admet l'hypothese qu'en 1931 la part des annees vecues sans incapacite au sein de l'esperance de vie etait de 100%, l'esperance de vie sans incapacite de 1931 etait necessairement inferieure a l'esperance de vie du moment, done a la valeur de l'esperance de vie sans incapacite estimee pour 1978. Discussion Les critiques Les critiques concernant l'esperance de vie sans incapacite portent generalement sur la fiabilite des mesures de l'incapacite, sur !'interpretation des se- ries chronologiques et sur les problemes de compa- raison geographique. La fiabi/ite des mesures de l'incapacite. Une des principales critiques formulees des les premiers cal- culs concernait la fiabilite de la mesure de l'incapaci- te (28, 29). Mais, depuis 15 ans, de grands progres ant ete realises dans la mesure de l'incapacite grace aux concepts de deficiences/incapacites/handicaps et a la notion de role de survie proposes par l'OMS (30, 31); grace au developpement des indica- teurs portant sur les activites de la vie quotidienne (AVQ) (32) et sur les activites instrumentales de la vie quotidienne (AIVQ) (33); grace, enfin, a la distinc- tion des notions d'aptitude et de performance (34). On peut penser disposer, aujourd'hui, d'instruments fiables pour mesurer l'incapacite dans la population et pouvoir ainsi observer une eventuelle modifica- tion de l'etat de sante des populations au cours du temps. L'interpretation des series chronologiques. Pour plu- sieurs raisons, le principal probleme que rencontre l'esperance de vie sans incapacite est !'interpretation des series chronologiques. Citons, par exemple, le fait que les annees d'esperance de vie gagnees sur la mart ne se repartissent pas uniformement a tous les ages de la vie et done qu'a prevalence egale de l'incapacite par age, la part des annees d'esperance de vie vecues en incapacite peut augmenter (Wilkins). Citons le fait que les tendances observees aux Etats-Unis dependent du type et du niveau de severite de l'incapacite retenue dans les calculs comme le montre Crimmins (24). Mais la premiere raison est que la methode de Sullivan, en combinant les quotients d'une table de mortalite du moment (flux) avec des prevalences observees de l'incapacite (stocks, issus de l'histoire propre a chaque genera- tion), ne fournit qu'une estimation de la valeur re- cherchee avec une precision inconnue. II faut done etre tres prudent dans !'interpretation des series chronologiques actuellement disponibles. Pour etre un indicateur conjoncturel, permettant d'attacher une caracteristique globale de morbidite a TABLE 6. LIFE EXPECTANCY (LE) AND DISABILITY-FREE LIFE EXPECTANCY (DFLE), UNITED STATES OF AMERICA (1970 AND 19801 AND ENGLAND & WALES (1976-19851 (SULLIVAN METHOD) TABLEAU 6. ESPERANCE DE VIE (EV) ET ESPERANCE DE VIE SANS INCAPACITE (EVSI), ETATS-UNIS D'AMERIQUE (1970 ET 1980), ET ANGLETERRE ET GALLES (1976-1985) (METHODE DE SULLIVAN) Country - Pays (Years - Annees) United States of America8 - Etats-Unis d'Amerique8 1970 1980 England & Wa/esb - Ang/eterre et Gal/esb 1976 1981 1985 • Reference (24) - Reference (24). O Reference (22) - Reference (22). Rapp. trimest. statist. sanit. mond., 42 (1989) LE EV 67.0 70.1 70.0 71.1 71.8 Males - Sexe masculin DFLE EVSI 54.8 55.5 58.2 58.5 58.7 DFLE/LE EVSI/EV % 81.8 79.2 83.1 82.3 81.8 LE EV 74.6 77.6 76.1 77.1 77.7 Females - Sexe feminin DFLE EVSI 60.4 60.4 61.7 60.6 61.5 DFLE/LE EVSI/EV % 81.0 77.8 81.1 78.6 79.2 - 146 - une courte periode (une annee par exemple), l'espe- rance de vie sans incapacite devrait resulter unique- ment de la combinaison des flux du moment: quo- tients de mortalite par age et probabilites de transi- tion entre les etats de bonne sante et d'incapacite a chaque age. Des calculs experimentaux (Tableau 7), utilisant uniquement des donnees du moment, ant deja ete realises pour la population agee de 65 ans et plus au Massachusetts (35) e et en Haute- Normandie (36).t L'etude de Haute-Normandie sug- gere que la sur-incapacite observee en terme de prevalence chez les femmes par rapport aux hom- mes peut etre expliquee par le differentiel de survie une fois l'incapacite acquise (1), hypothese que con- forte une etude recente de Manton sur !'incidence de l'incapacite aux Etats-Unis (37). Autrement dit, la fre- quence de l'entree en incapacite ne serait pas plus elevee chez les femmes que chez les hommes; par contre, une fois l'incapacite acquise, la survie serait plus longue chez les femmes que chez les hommes. Ouelles que soient les restrictions que l'on puisse faire sur !'interpretation des series chronologiques d'esperance de vie sans incapacite obtenues avec la methode de Sullivan, ii reste que cette methode utilise des donnees de plus en plus souvent disponi- bles dans les differents pays, alors que la methode «du moment» necessite des donnees encore tres difficiles a obtenir aujourd'hui. Les series d'esperan- ces de vie sans incapacite obtenues avec la methode de Sullivan seront, sans aucun doute, de plus en plus nombreuses et ii vaut mieux reflechir sur la fa~on de les interpreter que de les rejeter en bloc au nom de la coherence statistique. Les comparaisons geographiques. Par ailleurs, les resultats exposes ci-dessus montrent que la constitu- tion de series chronologiques n'est pas le seul inte- ret, loin de la, du calcul de l'esperance de vie sans incapacite. Pour les pays qui n'ont pas encore fait le calcul, la methode de Sullivan permet d'estimer facilement la duree moyenne de la vie vecue en bonne sante. Un interet majeur de ce calcul est de se situer par rapport aux pays qui l'ont deja effectue. La generalisation du calcul de l'EVSI, en utilisant dans un premier temps la methode de Sullivan, suppose done que l'on examine les conditions necessaires pour les comparaisons geographiques, en particulier internationales: definition des taux d'institutionnali- sation; nature des donnees d'incapacite utilisees (permanentes au provisoires, unidimensionnelles au • L'esperance de vie sans perte d'autonomie a 65 ans (active life expectancyt. I L'esperance de vie sans confinement au domicile a 65 ans. multidimensionnelles, etc.); ponderation au non des differents etats; etc. Les qualites Les principales qualites attribuees a l'EVSI, en tant qu'indicateur global de l'etat de sante des popula- tions, sont sa simplicite et son cote «parlant», son utilite pour determiner les besoins et planifier les services, pour fixer des objectifs de sante et mesurer le succes au l'echec des politiques mises en ceuvre, pour prevoir les besoins et determiner des scena- rios. Les objectifs de sante. Si l'objectif principal des systemes de sante et sociaux est non seulement de prolonger la duree de la vie mais d'en maintenir egalement la qualite en terme d'autonomie au de fonctionnement social aussi longtemps que possi- ble (10), l'EVSI nous rapproche bien en theorie, tel que le souligne Davies (38), du type d'indicateur ideal pour controler la realisation des objectifs de sante. L'inegalite face a la sante. L'EVSI, en combinant des donnees concernant a la fois la quantite et la qualite des annees vecues, a toutes les qualites pour deve- nir un indicateur important de l'equite en matiere de sante. Par ailleurs, le calcul de l'EVSI suggere, forte- ment, que l'inegalite face a la sante est plus grande entre les groupes sociaux qu'entre les sexes, ce qui confirme et renforce l'hypothese de Surrault sur !'importance ,elative de ces deux types d'inegali- te (39J. Conclusion Des scenarios pour l'avenir II existe dans les projections demographiques actuel- les (41) plusieurs hypotheses argumentees sur la progression de l'esperance de vie. En simplifiant, on peut opposer quatre grandes hypotheses: a) la duree de la vie de l'espece humaine (life span) est limitee et constante dans le temps, la valeur atteinte par l'esperance de vie (life expectancy) est tres proche de cette duree, la croissance future de l'esperance de vie est done forcement tres limitee (4); b) la duree de l'espece humaine est peut-etre constante dans le temps, mais on ne connait pas la valeur de cette limite biologique, par consequent on ne peut rien dire d'une eventuelle contrainte pesant sur la crois- sance a venir de l'esperance de vie; c) la duree de la vie de l'espece humaine n'est peut-etre meme pas TABLE 7. DISABILITY-FREE LIFE EXPECTANCY (DFLE) AT AGE 65 - MOST RECENT VALUE, CALCULATED BY THE MOMENT METHOD TABLEAU 7. ESPERANCE DE VIE SANS INCAPACITE (EVSI) A 65 ANS - VALEUR LA PLUS RECENTE CALCULEE D'APRES LA METHODE DU MOMENT Males - Sexe masculin Females - Sexe feminin DFLE/LE DFLE/LE Region - Region LE' DFLE EVSI/EV LE' DFLE EVSI/EV EV' EVSI % EV' EVSI % Massachusettsb- Massachusettsb (1974-1976) 13.1 9.3 71.0 19.5 10.6 54.4 Upper Normandyc - Haute-Normandiec (1978-1982) 13.8 11.6 84.1 17.9 12.9 72.1 a Life expectancy - Esperance de vie. b Reference (35): active life expectancy - Reference (35): esperance de vie sans incapacite. c Reference (36): non-housebound life expectancy - Reference (36): esperance de vie sans confinement au domicile. Rapp. trimest. statist. sanit. mond., 42 (1989) - 147 - constante, ii est possible qu'elle augmente lente- ment au cours du temps (42), par consequent ii n'y a peut-etre pas de contraintes fixes pesant sur la croissance a venir de l'esperance de vie; d) ii est possible que les techniques biologiques et geneti- ques permettent dans un proche avenir d'agir sur la duree de la vie de l'espece humaine et de l'accroitre fortement (43), supprimant ainsi d'eventuelles con- traintes pesant sur la croissance a venir de l'espe- rance de vie. Par ailleurs, dans un contexte generalise de diminu- tion de la mortalite, on observe des hausses pour certaines causes. De la meme fa~on, on peut penser que le developpement des techniques de contr61e ou d'amenagement de la maladie n'est pas homogene pour chaque pathologie (40). Ces elements ainsi que !'absence de consensus sur les relations avec l'etat de sante, en particulier considere sous l'angle fonc- tionnel, justifient que l'on cherche a etablir et a projeter des series chronologiques d'esperance de vie sans incapacite. De telles series permettraient non seulement de verifier les differentes theories exposees sur !'evolu- tion de l'etat de sante fonctionnelle des populations. II devrait, alors, etre possible de faire des previsions sur l'etat de sante en utilisant differents scenarios d'evolution de l'incapacite comme on le fait deja pour la mortalite. RESUME L'esperance de vie sans incapacite (EVSI) est un indicateur de la duree moyenne de la vie vecue en bonne sante qui s'appuie a la fois sur la mesure de la mortalite et sur celle de l'incapacite. A ce jour, une dizaine de calculs experimentaux ant ete effec- tues, principalement en Angleterre, au Canada, aux Etats-Unis, en France et aux Pays-Bas. En rassem- blant des etudes, on peut estimer, pour la derniere decennie, la valeur de l'esperance de vie sans inca- pacite a environ 59 ans pour le sexe masculin et a environ 63 ans pour le sexe feminin. La part des annees d'incapacite au sein de l'esperance de vie varie de 11% a 27%. Le calcul montre qu'une plus grande partie de l'esperance de vie est vecue en incapacite par les femmes que par les hommes. Le calcul precise egalement les inegalites sociales face a la sante. Les autorites sanitaires des pays occiden- taux manifestent aujourd'hui un interet croissant pour cet indicateur. Les principales qualites qui lui sont attribuees sont sa simplicite d'emploi, son utili- te pour fixer des objectifs, allouer les ressources, mesurer le succes ou l'echec des politiques de sante, estimer les besoins presents et determiner des sce- narios pour l'avenir. SUMMARY Estimating disability-free life expectancy (DFLE) in the Western countries in the last decade - how can this new indicator of health status be used? Disability-free life expectancy (DFLE) is an indicator of the mean duration of life in good health, based on the measurement of mortality combined with the measurement of disability. To date, some experi- mental calculations have been carried out mainly in Canada, England, France, the Netherlands and the United States of America. Taking these studies as a whole, disability-free life expectancy in the last de- cade can be estimated at about 59 years for men and about 63 years for women. The share of years of disability within life expectancy ranges from 11% to Rapp. trimest. statist. sanit. mond., 42 (1989) 27%. The calculations show that women suffer dis- ability for a greater part of their life expectancy than men. The calculations also reveal social inequalities in health. Health authorities in Western countries are showing increasing interest in this indicator today. The main points in its favour are its simplicity in practice, its usefulness for determining objectives, allocating resources, measuring the success or failure of health policies, assessing current needs and defining future scenarios. - 148 - ANNEXE Exemple de calcul de l'esperance de vie sans incapacite (EVSI) selon la methode de Sullivan A partir des survivants (b) d'une table de mortalite (Tableau A), on calcule le nombre d'annees vecues entre chaque age (c). Puis on se sert des taux de prevalence de l'incapacite (d) pour calculer le nom- bre des annees vecues en incapacite (e). En dedui- sant ces annees du nombre d'annees vecues entre chaque age (c), on obtient le nombre d'annees ve- cues sans incapacite (f). II suffit alors de cumuler ces annees a partir d'un age x quelconque (a) et de les rapporter a l'effectif des survivants a cet age (b) pour obtenir l'esperance de vie sans incapacite a l'age x (g). Ainsi, le cumul des annees vecues sans incapacite a partir de 65 ans est egal a 1 087 653 annees. II suffit de diviser ce total par les survivants a 65 ans pour estimer l'EVSI a 65 ans pour le sexe masculin en Haute-Normandie en 1979: 1 087 653 divise par 100 OOO (b), soit 10,9 annees (g). A partir de 70 ans, le cumul des annees vecues sans incapacite est egal a 660 108 annees. II suffit de diviser ce total par les survivants a 70 ans pour estimer l'EVSI a 70 ans: 660 108 divise par 85 486 (b), soit 7,7 annees (g), etc. Tableau A. Esperance de vie sans perte de mobilite ou d'autonomie en Haute-Normandie en 1979 pour le sexe masculin (methode de Sullivan) T aux de prevalence Annees vecues en Annees vecues sans de l'incapacite incapacit6 incapacite Age x Survivants Sx Annees vecues entre x et x+a entre x et x+a entre x et x+a entre x et x+a EVSI a partir de x (a) (b) (c) (d) (e) (~ (g) 65 100 OOO 463 715 0,078 36170 427 545 10,9 70 85 486 376 533 0,137 51 585 324948 7,7 75 65127 266 085 0,243 64659 201 426 5,1 80 41 307 147 690 0,310 45 784 101 906 3,2 85 17 769 59 025 0,615 36300 22725 1,8 90 5 841 19 043 0,522 9940 9103 1,6 Source: Reference ( 7), a partir de: Colvez, A. In: Rumeau-Rouquette, C. et al. Methodes en epidemiologie: echantillonnage, investigations, analyse. Paris, Flammarion Medecine Science, 1984. (pp. 103-108) (Troisieme edition). ANNEX Example of the calculation of disability-free life expectancy (DFLE) by the Sullivan method Taking the survivors (b) in a mortality table (Table A), the number of years of life between each age (c), are first calculated. Rates of prevalence of disability (d) are then used to calculate the number of years lived with disability (e). By deducting these years from the number of years lived between each age (c}, the number of active years (without disability) is ob- tained (f). The cumulative total of these years is then computed from any given age x (a) and related to the total number of survivors at that age (b) to obtain active life expectancy at age x (g). The total number of years without disability from the age of 65 upwards is thus 1 087 653. This total is divided by the number of survivors aged 65 to estimate the DFLE for males at age 65 in Upper Normandy in 1979: 1 087 653 divided by 100 OOO (b), i.e. 10.9 years (g). From the age of 70 upwards the total number of years without disability is 660 108. This total is div- ided by the number of survivors aged 70 to estimate the DFLE at age 70: 660 108 divided by 85 486 (b), i.e. 7.7 years. (g), etc. Table A. Male life expectancy without loss of mobility or autonomy in Upper Normandy in 1979 (Sullivan method) Prevalence of Years without Years of life disability between Years of disability disability between DFLE Age x Survivors Sx between x and x+a x and x+a between x and x+a x and x+a from x (a) (b) (cl (d) (e) rn (g) 65 100 OOO 463 715 0.078 36170 427 545 10.9 70 85 486 376 533 0.137 51 585 324948 7.7 75 65 127 266085 0.243 64659 201 426 5.1 80 41 307 147 690 0.310 45 784 101 906 3.2 85 17 769 59 025 0.615 36 300 22 725 1.8 90 5 841 19 043 0.522 9940 9 103 1.6 Source: Reference ( 7), based on: Colvez, A. In: Rumeau-Rouquette, C. et al. Methodes en epidemiologie: echantillonnage, investigations, analyse. Paris, Flammarion Medecine Science, 1984. (pp. 103-108) (Third edition). Rapp. trimest. statist. sanit. mond., 42 (1989) - 149 - REFERENCES- REFERENCES 1. Ros1NE, J.M. ET AL Les indicateurs d'esperance de vie sans incapacite (EVSI) - des indicateurs globaux de l'etat de sante des populations. Revue d'epidemiologie et de sante publique, 35: 206-224 (1987). 2. FucH, V. R. "Though much is taken": reflections on aging, health and medical care. Mi/bank Memorial Fund quarterly/Health and society, 62: 143-165 (1984). 3. MANTON, K. G. Changing concepts of morbidity and mortality in the elderly population. Mi/bank Memorial Fund quarterly/Health and society, 60: 183-244 (1982). 4. FRIES, J. F. Aging, natural death, and the com- pression of morbidity. New England journal of medicine, 303: 130-135 (1980). 5. FRIES, J. F. Aging, illness, and health policy: im- plications of the compression of morbidity. Per- spectives in biology and medicine, 31 (3): 407- 428 (1988). 6. SCHNEIDER, E. L. & BRODY, J. A. Aging, natural death, and the compression of morbidity: another view. New England journal of medicine, 309: 854-856 (1983). 7. GRUENBERG, E. M. The failure of success. Mi/bank Memorial Fund quarterly/Health and society, 55: 3-24 (1977). 8. KRAMER, M. The rising pandemic of mental disor- ders and associated chronic diseases and disabi- lities. Acta psychiatrica scandinavica, 62 (Sup- plement 285): 282-297 (1980). 9. MANTON, K. G. & SOLDO, B. J. Dynamics of health changes in the oldest old: new perspectives and evidence. Mi/bank Memorial Fund quarterly/ Health and society, 63: 206-285 (1985). 10. WHO Technical Report Series No. 706, 1984 (The use of epidemiology in the study of the elderly: report of a WHO scientific group on the epide- miology of aging). OMS Serie de Rapports techniques N° 706, 1984 (Applications de l'epidemiologie a l'etude du vieillissement: rapport d'un groupe scientifique de l'OMS sur l'epidemiologie du vieillissement). 11. SANDERS, B. S. Measuring community health levels. American journal of public health, 54: 1063-1070 (1964). 12. SULLIVAN, D. F. A single index of mortality and morbidity. HSMHA health reports, 86: 347-354 (1971). 13. Ros1NE, J. M. ET AL L'esperance de vie sans inca- pacite en France en 1982. Population, 6: 1025- 1042 (1986). 14. US DEPARTMENT OF HEALTH, EDUCATION AND WELFARE. Toward a social report. Washington, D.C., US Government Printing Office, 1969. 15. CoLvEz, A. Evolution de /'etat de sante au cours de la derniere decennie: peut-on continuer a par/er d'amelioration? Quebec, Ministere des af- faires sociales, Service des etudes epidemiologi- ques, 1980. 16. WILSON, R. W. & DRURY, T. F. Interpreting trends in illness and disability: health statistics and health status. Annual review of public health, 5: 83-106 (1984). 17. VERBRUGGE, L. M. Longer life but worsening health? Trends in health and mortality of middle- aged and older persons. Mi/bank Memorial Fund quarterly/Health and society, 62: 475-519 (1984). Rapp. trimest. statist. sanit. mond., 42 (1989) 18. WILKINS, R. & ADAMS, 0. B. Health expectancy in Canada, late 1970s: demographic, regional, and social dimensions. American journal of public health, 73: 1073-1080 (1983). 19. DILLARD, D. Duree ou qualite de la vie? Quebec, Conseil des affaires sociales et de la famille, 1983. (Les Publications du Quebec, collection La sante des Quebecois). 20. WILKINS, R. & SAUVAGEAU, Y. lncapacite Canada. In: Emond, A. (ed.), Et la sante fa va? Quebec, Les Publications du Quebec, 1988. (Chapitre 8, pp. 175-192). (Rapport de l'enquete Sante Quebec 1987, Tome 1). 21. ROBICHAUD, J.B. La sante des francophones. Moncton, Les Editions d'Acadie. 1985. (pp. 117- 137). 22. BEBBINGTON, A. C. The expectation of life without disability in England and Wales. Social science and medicine, 27 (4): 321-326 (1988). 23. VAN G1NNEKEN, J. K. S. & BONTE, J. Calculation of life expectancy free of disability in the Netherlands in 1981-1985. Netherlands Institute of Preventive Health Care TNO and CBS. (In preparation - A paraitre). 24. CRIMMINS, E. M. ET AL Changes in life expectancy and disability-free life expectancy in the United States. Population and development review. (In preparation - A paraitre). 25. Ko1zuM1, A. Health problems of the year 2000 and beyond. Health policy, 4: 307-319 (1985). 26. CoLVEZ, A. & BLANCHET, M. Potential gains in life expectancy free of disability: a tool for health planning. International journal of epidemiology, 12 (2): 224-229 (1983). 27. PERON, Y. & STROHMENGER, C. Indices demographi- ques et indicateurs de sante des populations: presentation et interpretation. Ottawa, Ministere des approvisionnements et services Canada, 1985. (Statistique Canada, catalogue 82-543 F hors serie). 28. GOLDBERG, M. ET AL. lndicateurs de sante et «sa- nometrie»: les aspects conceptuels des recher- ches recentes sur la mesure de l'etat de sante d'une population. Premiere partie. Revue d'epi- demiologie et de sante publique, 27: 51-68 (1979). 29. GOLDBERG, M. ET AL lndicateurs de sante et «sa- nometrie»: les aspects conceptuels des recher- ches recentes sur la mesure de l'etat de sante d'une population. Deuxieme partie. Revue d'epi- demiologie et de sante publique, 27: 133-152 (1979). 30. WORLD HEALTH ORGANIZATION. International Classifi- cation of Impairments, Disabilities, and Handi- caps-a manual of classification relating to the consequences of disease. Geneva, WHO, 1980. ORGANISATION MONDIALE DE LA SANTE. Classification internationale des handicaps: deficiences, inca- pacites et desavantages - un manuel de classifi- cation des consequences des maladies. Paris, CTNERHI-INSERM, 1988. 31. WooD, P. H. N. Appreciating the consequences of disease: the International Classification of Im- pairments, Disabilities, and Handicaps. WHO Chronicle, 34: 376-380 (1980). WOOD, P. H. N. Comment mesurer les conse- quences de la maladie - La Classification inter- nationale des infirmites, incapacites et handi- caps. Chronique OMS, 34: 400-405 (1980). - 150 - 32. KATZ, S. & AKPOM, C. A. A measure of primary sociological functions. International journal of health services, 6: 493-508 (1976). 33. LAWTON, M. P. & BRODY, E. M. Assessment of older people: self-maintaining and instrumental activities of daily living. Gerontologist, 9: 179- 186 (1969). 34. COLVEZ, A. & Ros1NE, J. M. Problems encountered in using the concepts of impairment, disability, and handicap in a health assessment survey of the elderly in Upper Normandy. International rehabilitation medicine, 8: 18-22 (1986). 35. KATZ, S. ET AL Active life expectancy. New England journal of medicine, 309: 1218-1224 (1983). 36. BROUARD, N. & ROBINE, J.M. Modelling the con- finement of the elderly to the home. Conference on theoretical and medical biology. (In prepara- tion - A paraitre). 37. MANTON, K. G. A longitudinal study of functional change and mortality in the United States. Jour- nal of gerontology: social sciences, 45 (5): 5153- 161 (1988). 38. DAVIES, M. Epidemiology and the challenge of ageing. International journal of epidemiology, 14: 9-21 (1985). 39. SURRAULT, P. Reflexion sur les perspectives de mortalite. Espace population societes, 11: 85-97 (1986). 40. ROSINE, J. M. & BRUNELLE, Y. La hausse de l'invali- dite. Quebec, Les Publications du Quebec, 1986. (Collection La sante des Quebecois). 41. OLSHANSKY, S. J. Simultaneous multiple cause- delay (SIMCAD): an epidemiological approach to projecting mortality. Journal of gerontology, 42 (4): 358-355 (1987). 42. MANTON, K. G. Past and future life expectancy increases at later ages: their implications for the linkage of chronic morbidity, disability, and mor- tality. Journal of gerontology, 45 (5): 672-681 (1986). 43. STAEHLER, B. L. Implications of aging research for society. Proceedings of the Federation of Ameri- can Societies for Experimental Biology, 34: 5-8 (1975). Rapp. trimest. statist. sanit. mond., 42 (1989) - 151 - THE INTERNATIONAL CLASSIFICATION OF IMPAIRMENTS, DISABILITIES, AND HANDICAPS (ICIDH): ITS USE IN REHABILITATION Marijke de Kleijn - de Vrankrijker,a Christa Seidelb & Ursula Tschernerb When considering areas that could benefit from the International Classification of Impairments, Dis- abilities, and Handicaps (ICIDH), one of the first that comes to mind is rehabilitation (1). Definition of rehabilitation The best known definition of the term "rehabili- tation" seems to be the "Vienna" definition (1955), which reads as follows: "Rehabilitation is the com- plex of measures and activities aimed at raising the physical, mental, social, occupational and economic possibilities of a handicapped person to the highest possible level he can achieve and/or at maintaining them at this level".c The United Nations World Programme of Action concerning Disabled Persons (2) established in 1983, developed the following definition taking into ac- count the ICIDH definitions: "Rehabilitation means a goal-oriented and time- limited process aimed at enabling an impaired person to reach an optimum mental, physical and/ or social functional level, thus providing her or him with tools to change her or his own life. It can involve measures intended to compensate for a loss of function or a functional limitation (for example by technical aids) and other measures · intended to facilitate social adjustment or readjust- ment". Rehabilitation activities are clearly focused on (po- tential) consequences of diseases, accidents and conditions from birth. This explains why the ICIDH is of interest to all those involved in rehabilitation. Since the publication of the ICIDH in 1980 several types of application in the rehabilitation field have been reported in the literature. This article aims to provide an overview of the application of the ICIDH in the field of rehabilitation, showing possibilities and giving examples of actual use. The authors hope to stimulate the use of the classification and the exchange of information; this may avoid duplication of effort and could lead to improvements in the classification. • WHO Collaborating Centre for the ICIDH, Zoetermeer, The Netherlands; and Ministry of Welfare, Health and Cultural Affairs, Rijswijk, The Netherlands. b Rehabilitation Centre, Klinikum Berlin-Buch, Berlin, German Democratic Republic. c Lower House of Parliament. Outline of the present defini- tion with regard to rehabilitation policy. 1976-1977 Session. Leid- schendam, The Netherlands, 15 March 1977. (p. 6). d Bangma, B. D. Use of the ICIDH in the period 7983-1985; Education and training; Research and concepts of the /C/DH. Rotterdam University Hospital. 1985. Papers presented at a meeting held in Voorburg, The Netherlands, 24-28 June 1985. (WHO documents DES/ICIDH/85.20, 21 & 22). Wld hlth statist. quart., 42 (1989) This article is confined to experiences with respect to rehabilitation facilities, which means a somewhat restricted area of rehabilitation. A broader overview of applications, including other areas, is given by de Kleijn & Muller (3) and by the Dutch National Council for Public Health (4), from which some parts of this article are derived. Possibilities of the ICIDH Why are classifications important? Using the same classification means speaking a common language and using a common framework. This leads to better understanding and communication, which in turn can result in improved services. A classification also means structuring a certain area, thus facilitating policy formulation, data collection, statistics and documentation of information_ Comparability of data and exchange of information can both be enhanced_ This also holds for a classification such as the ICIDH, within the area of rehabilitation (5-7). Depending on the user's aim, the IDH classification can be used to different extents (basic concepts, some details/codes/categories, one of the three sub- classifications or all parts/details) and at different levels_ At the micro level (individual), the classifica- tion can be used directly in patient care: for diagno- sis, problem ascertainment and evaluation of treat- ment. At the mesa level (organizations) its uses are to be found within institutions. Data collected at the micro level can serve as a source of information for policy making and planning, for example, to define priorities for allocating available resources among different sections and functions of the institutions, and to determine the number of staff required for certain purposes. The macro levels include all those which exceed the level of the institution: local, regional, national, federal and international levels. On each of these levels, consistency is needed for policy formulation and for data collection. Following are some examples of actual use of the ICIDH for various purposes to different extents and at different levels, in a number of countries. General applications of the ICIDH Micro level Most examples of ICIDH use in general rehabilitation seem to be at the micro level (individual). At Rotterdam University Hospitald (BJ the ICIDH is used in the daily routine of the rehabilitation depart- ment (diagnostics), in the curricula of medical students and specialists in rehabilitation medicine, as well as in postgraduate education_ It is also being used in a research project involving 1 OOO patients, the purpose of which is to check the usefulness of - 152 - I and D codes in classifying rehabilitation diagnoses and evaluating rehabilitation practice. The latter pro- jects showed that ICIDH contributes considerably to the elaboration of concepts in the philosophy and methodology of rehabilitation. Adequate training of physicians and other personnel is however neces- sary in order to obtain reliable findings, and use of the ICIDH appears to be very time-consuming; es- sential items are missing in some chapters and in other chapters the classification of items is not prac- tical. Lankhorst et al. (9) report on a feasibility study con- ducted in the Centre for Rheumatology and Re- habilitation, Amsterdam (The Netherlands) in the early 1980s: 1 148 patients were classified by their physician, the opinion of the physicians about the feasibility of the ICIDH was recorded, and 21 patients were classified twice to assess reliability. The results suggest that the I code is suitable for patients with locomotor disorders. The use of the D code present- ed several problems (very time-consuming, and low reliability of D code assignments). The H code seemed to allow for simple meaningful scorings (making it tempting to use it as a substitute for the D code), and, as a result of this project, the Centre used only the H code for some time. In the opinion of Lankhorst, the resulting handicap profile turned out to be a useful summary of the patient's dis- abilities but not a measure of the social con- sequences of disablement, which was the original aim of the handicap classification. Another criticism concerns the absence within the ICIDH of subjective perception of impairments and disabilities. Because of these experiences the Centre later started a project (10) aiming at the development of an in- strument based on the ICIDH which can be used in the daily practice of rehabilitation medicine. The instrument is an adapted version of the D(isability) list, consisting of 28 items in five fields (mobility, self-care, social activities, psychological status and communication). Four-point severity scales were used for rating disabilities and related perceived problems. The instrument has been used for screen- ing disabilities and problems in 400 patients. Feasibi- lity was excellent, and the average amount of time needed was 3 minutes per patient. A computerized data-base structure was developed for evaluation of serial data from individuals or patient groups during the rehabilitation process. Analysis of disabilities and related problems shows that adaptive processes are relevant in rehabilitation medicine. Perceived problems are often less severe than objectively "Charpentier, P. L'apport de la classification internationale des handicaps en reeducation. A propos de 950 dossiers. In: Council of Europe, Committee on the Rehabilitation and Resettlement of the Disabled, Committee of Experts on the Application of the WHO Classification of Impairments, Disabilities and Handicaps, Records of the second session, 6-8 December 1988. Strasbourg, Council of Europe, 1988. (CD-P-RR (88) 13). I Putterman, A. H. The use of the International Classification of Impairments, Disabilities, and Handicaps, as a planning instrument in rehabilitation. Montreal, Constance Lethbridge Rehabilitation Centre, 1987. Paper presented at the third Canadian congress on rehabilitation, Quebec, June 1987. 9 Zendel, I. H. Rehabilitation planning expert system (RP!XJ classifier. Montreal, Constance Lethbridge Rehabilitation Centre, 1987. Paper presented at the third Canadian congress on rehabilita- tion, Quebec, June 1987. "Nieuwenhuijsen, E. R. The ICIDH as a framework for document- ing small gains in rehabilitation. East Lansing, Disability Research Systems, 1987. Paper submitted for the proceedings of the pre- congress day of the third Canadian congress on rehabilitation, Quebec, June 1987. assessed disabilities in a chronic phase of disease; this may influence the action taken. Minaire (11) reports on ICIDH use in France for indi- vidual assessments in rehabilitation, and for the education and training of staff. In the rehabilitation centre of Coubert (France) the ICIDH has been in use since 1982. Charpentier mentions some experiences based on the analysis of 953 case files in this centre. For each admission and discharge are included: 1 main diagnosis, up to 5 secondary diagnoses, up to 8 impairments, up to 10 disabilities, up to 5 handicaps. The impairments recorded appeared to be mainly skeletal and disfiguring impairments. Within the disability area of personal care, locomo- tor and body disposition disabilities are most often reported. A significant difference in the severity of most disabilities is found between admission and discharge, providing an indication of the effective- ness of treatment. At the handicap level significant differences between admission and discharge have been found only for physical independence and mobility handicaps. Charpentier concludes that the ICIDH makes it possible to identify rehabilitation needs of patients and to evaluate the services re- quired. Nadeau et al. (12) announced the introduction of the ICIDH in a computerized hospital information system. In Montreal, Puttermant describes intake forms used by nurses, the preparation of a treatment plan which sets goals for each recorded impairment and disability and that of discharge summaries, all based on the ICIDH. The system resulted in improved communication, more comprehensive treatment, better treatment planning, better informed clients and improvement in documentation. From the same centre, Zendel9 announced the development of a rehabilitation plan- ning expert system; the introduction of such systems in the area of rehabilitation may encounter some problems, particularly in the area of ethics. The ICIDH as a framework for documentin~ small gains is described by Nieuwenhuijsen. The Michigan Commission for the Blind wanted to create an instrument that allowed for quantitative measures of small gains in functional ability. These small gains must be measured in order to demonstrate pro- gramme effectiveness. The instrument, now in use; is based on the ICIDH including most of the D codes. In Australia, Ford (13) carried out a project in Caulfield Hospital which involved a number of ex- ercises to educate staff about the principles and projected uses of the ICIDH. Within selected units of the hospital, the possibilities of the classification to serve as a summary of the patient's physical, intel- lectual and social status at the time of discharge from hospital were examined. The main difficulties encountered were logistical. The routine use of the classification as part of a patient's discharge status was abandoned because of the time needed for consultation and discussion between disciplines. A more optimistic report has been given by Last (14) who has described experiences with the ICIDH in Australia's largest nursing home. Coding has been undertaken for 102 residents using the ICIDH. This has proved simple and effective as a means of categorizing impairments and disabilities. A compu- ter program allows for the storage and retrieval of up to 8 ICD diagnoses, 6 impairments, 30 disabilities and 6 handicaps per resident. Experienced nurses Wld hlth statist. quart., 42 (1989) - 153 - can code a person in half an hour. Periodic review every six months is now planned for all residents. The handicap code was abandoned because its usefulness was less obvious. The system will allow for efficient surveillance of the progress of individual residents, will highlight those calling for clinical review, and will identify those who may benefit from specific management and research programmes. Macro level Most of the examples mentioned above concern the use of the ICIDH at the micro level (individual), although some are tending to serve at the mesa level (organization). To our knowledge, only a very few examples exist at macro level. One of them is the UN programme already mentioned (2). The Council of Europe (15) used the ICIDH concepts in a similar way in its policy statements on the rehabilita- tion of disabled people. L 'Office des personnes handicapees du Quebec, a provincial government agency mandated to oversee and, if necessary, enforce the application of legisla- tion concerning the rights of handicapped persons in Quebec, has proposed a comprehensive policy aim- ing at the social integration of disabled persons through the elimination of factors contributing to an eventual impairment (e.g. chemical agents, rubella, alcohol and drug abuse), an intervention model to prevent or minimize the impact of impairment or disability as well as the elimination of physical and social barriers (e.g. convenience of buildings, access to the workforce, adequate income). In January 1984 the Quebec government officially adopted On equal terms (16) which is based on the conceptual model of the ICIDH. In another sense, but still at the macro level, the use of the ICIDH concepts and categories is reported within the framework of community-based rehabili- tation in Punjab, Pakistan (see Finnstam et al. (17) and Grimby et al. (18).; Van der Meulen used the ICIDH concepts in a comparable way in Guinea- Bissau (Community-based rehabilitation in Guinea- Bissau, personal communication, 1988). In the area of training, Der Wegweiser fiir Artzte (19) is another example of the use of ICIDH concepts, terms and categories in an informative booklet sent to all medical doctors in the Federal Republic of Germany. ; See also Use of the WHO classification in assessing the prevalence of diseases, impairments and handicaps in Punjab Province, Pakistan, p. 157 of this issue. i Ferngren, H. Is ICIDH of value in medical rehabilitation of disabled children? Some Scandinavian experiences. Stockholm, St. Giiran's Children's Hospital, 1985. Paper presented at a meeting held in Voorburg, The Netherlands, 24-28 June 1985. (WHO document DES/ICIDH/85.18). • Andrada, M. G. et al. Children with spinal cord lesions and their rehabilitation problems. Paper presented at the Rehabilitation International Conference, Lisbon, June 1984. I Kamczuk, L. G. & Martinow, W. L. [Utilization of the International Classification of Impairments, Disabilities, and Handicaps in the analysis of injured children and their families-for example, of children with cerebral palsy]. Paper presented at an international symposium on assessment criteria to estimate the need for rehabilitation measures, Dresden, 6-10 June 1988. (In German). Wld hlth statist. quan., 42 (1989) Use of the ICIDH for the rehabilitation of special groups Children and adolescents Pfeiffer (20) compared the current register of con- sequences of disease in children and young people in Czechoslovakia with the ICIDH. He examined the medical records of children with locomotor dis- orders and made use of the majority of items from the ICIDH. For some disabilities he developed special severity scales, which are derived to some extent from the I code. He also consulted a group of specialists interested in the problems of children with deafness, blindness and psychiatric disabilities. Ferngren et al.i (21) tested the ICIDH on the admis- sion records of 60 mentally-retarded children in Sweden. They compared the results with medical, psychological and social data and found a positive correlation between the scores of the ICIDH and the records; they divided the mentally retarded children into two groups: one with mild and the other with severe mental retardation, and were especially inter- ested to note the severity of disabilities to see whether it was possible to identify progress in people moving from a big institution to smaller group homes. The conclusion was that the D code was useful in some aspects concerning personal care. Ferngren modified the handicap code of ICIDH for a study of 6-7 year-old mentally-retarded children and concluded that it is possible to use it for children in this age group. In the German Democratic Republic, Seidel & Tscherner (22) examined 480 physically or mentally impaired children in the age group 12-16 years, including 208 with moderate mental retardation, and classified them with the help of the D code. Especi- ally for severely physically-impaired children in this age group, selected items are suitable to specify degrees of disability. Good differentiating items (based on factor analyses) are "self-care", "manual skill" and "locomotion". For children with moderate mental retardation most scales are only of limited value because of lack of reliable data on the degree of disability. In Portugal, Andrada et al.k made a retrospective study of a group of 98 children with spinal cord lesions using the D and H codes, in view of the rehabilitation efforts and problems connected with these children's integration into the community. They selected D code scales (locomotion, excretion and mobility) and H code scales (physical independ- ence, social integration, school and occupational integration) and used condensed severity scales. The authors emphasize that the detail for quantification provided by the ICIDH must be used to improve evaluation records. Kamczuk & Martinow1 (USSR) tested 197 cerebral palsy children aged 7-14 years by means of ICIDH scales. The examination provided data about the type of disability and the problems facing these children and their families. The data are suitable for making complex medicosocial proposals for re- habilitation in order to solve the social problems of the children's families. Patients in rehabilitation At the Cologne rehabilitation centre (Federal Republic of Germany) headed by Jochheim, several doctoral theses have studied the applicability of the - 154 - ICIDH to special diagnostic groups. Volkmann (23), Pohlmann (24) and Wassenberg (25) investigated the need for rehabilitation among cancer patients. They used two questionnaires they had designed with the ICIDH in mind. The authors concluded that the hand- icap instrument can serve only as a rough but very easily applicable tool for the detection of severe handicaps in larger populations. The disability classi- fication provides a large amount of information for the exact assessment of disabled persons and can be useful for the analysis of rehabilitation needs as well as for medical certificates. Grimby et al. (26) followed 76 consecutive stroke patients in a rehabilitation ward over a period of 18 months in Sweden. The authors believe that the WHO system can be useful in describing the type and pattern of disablements in a group of patients admitted to a rehabilitation ward and that it provides information on staffing demands and criteria for admittance and discharge. The authors propose to restrict the ICIDH to two categories of consequences of disease or trauma: impairments and disabilities. The conclusions of Alaranto & Kallio (27) are based on 212 patients who were evaluated one year after an operation for lumbar disc herniation in Finland, using the ICIDH concepts. The severity of disorders, impairments and disabilities was scaled into four classes. Handicap was evaluated by a team consist- ing of a physician, a social worker and a psy- chologist. The discerning analysis of these data items revealed a high correlation with the classes of occupational handicap. The severity scale for dis- ability was not suited to most patients with low back pain. Assignment to the different scale categories of occupational handicap was relatively easy. The authors found it helpful to combine the ICIDH with the model proposed by Purola (28) who defined illness as "a disturbance in the equilibrium between the individual's internal psychobiological system and the state of his external system of social con- nections". Using both models it becomes easier to define the aim of medical rehabilitation of patients with chronic low back pain and to overcome social problems. Two Cuban investigationsm confirm the necessity of applying the D code. 94 case reports of an ortho- paedic hospital were analysed and 115 patients were examined whose severity of disability and prognosis had been assessed by a team of physicians. The authors make a differentiated item analysis and dev- elop proposals on changes in some scales. Elderly people In Denmark Dalgaard & Horwitz (29) assessed 50 geriatric patients, inpatients as well as outpatients. The authors reached the following conclusions. The I code is useful in assessing treatment strategies for geriatric patients, for checking all the organ systems, and for determining priority of treatment in a re- levant range. The D code is useful in everyday mAstarian, R. et al. [Comments on the utilization of the classification of disabilities in morbidity surveys]. Paper presented at an international symposium on assessment criteria to estimate the need for rehabilitation measures, Dresden, 6-10 June 1988. (In German). "Seidel, C. State of the IC/OH in the German Democratic Republic. Rehabilitation Centre in Klinikum Berlin-Buch, 1987. Paper presented at the International ICIDH Workshop, pre-congress day of the third Canadian congress on rehabilitation, Quebec, June 1987. clinical practice. The outcome and efficiency of treat- ment can be evaluated from admission to discharge. The D code is also used for assessing and evaluating the need for aids and assistance. The H profile is noted as the best overview measure for evaluating the need for institutional care, and for aids and support services. In the German Democratic Republic, 500 residents of an old people's home were interviewed." The object was to find a method suitable for measuring dis- abilities in the elderly. The aim of the first stage of the investigation was to construct appropriate scales of the D code by means of Guttman's scalogram analysis (30). Five different scales for measurement were found, enabling the interviewer to specify what a person can and cannot do. A substantial reduction in the number of D code items can, therefore, be made. The Cologne rehabilitation centre also tested older people using the ICIDH. Scheele (31) assessed 107 residents of an old people's home by means of modified classifications of disabilities and handicaps. Compared with other questionnaires of handicaps in elderly people, the one developed by the Cologne rehabilitation centre makes possible a substantially more differentiated registration. The prognostic assessment provides important indications of def- . icits and seems promising for therapy and improve- ment. The H code enables a summarizing overview of the consequences of disabilities for social life. Both classification systems may serve as a basis for planning various intervention measures. Conclusions The examples mentioned above illustrate that the ICIDH has been applied by workers in the field of rehabilitation in many countries. The conceptual model is perceived as a helpful tool, although most authors make critical remarks and suggestions for improvement, which should be taken into account in case of revision of the classification. Most of the examples given above relate to ad hoe applications or research, only a few to implementation in routine use. The latter should be stimulated and experiences reported. Regarding the level of application, many of the users apply the ICIDH at the micro level. In some cases the complete classification is chosen (codes or terms in medical records and discharge summaries), in other cases an instrument (form, questionnaire, scale) based on selected items of the ICIDH has been developed. Applications should be analysed in depth to find out whether frequently-used applications or instruments could be standardized. Very few applications relate to the mesa level, which explains the lack of statistical data in this contribu- tion. More research in this area should be encour- aged, and the results published, both at mesa and macro levels. In order to stimulate use and to im- prove the quality of communication and data, ICIDH should be included in the curriculum of students and in the training of staff. The ICIDH may also serve as the basis for obtaining better information on special groups, i.e. information Wld hlth statist. quart., 42 (1989) - 155 - on the degree of severity of disabilities, changes in severity and profile of disabilities, and consequently, rehabilitation health-care measures. The ICIDH can serve as a basis for differentiating between various health-care groups. Future research using the ICIDH should include aspects of age groups and specificity of impairment. The methodological basis of the dis- ability and severity scales must be specified, and methods should be more closely linked to the pro- cess aspects of illness. Acknowledgements We wish to thank Angelique Grootscholten and Constance Scholten for their contribution in produc- ing this article. SUMMARY This article intends to show possibilities and ex- amples of actual use of ICIDH in rehabilitation. Most of the examples concern the use of the classification at the individual level (patient profile, assessment of patient needs, evaluation of treatment, discharge status). Some can serve at mesa level: aggregated data (statistics) for evaluation of treatment at insti- tutional level, determination of numbers of staff required. A few other examples concern the use of the ICIDH at macro level in rehabilitation: national policy, education and training of professionals, com- munity-based rehabilitation programmes. Special attention is given to examples of ICIDH use in re- habilitation of special groups such as children, the mentally retarded, cancer patients, elderly people, geriatric patients. RESUME Classification internationale des handicaps: deficiences, incapacites et desavantages (CIH) - son utilisation aux fins de la readaptation Le but de cet article est de montrer et d'illustrer les possibilites offertes par la classification internatio- nale des handicaps aux fins de la readaptation. La plupart des exemples concernent !'utilisation de la classification au niveau de l'individu (profil du pa- tient, evaluation de ses besoins, evaluation du traite- ment, etat a la sortie). Certaines de ces utilisations concernent le niveau intermediaire: donnees glo- bales (statistiques) pour !'evaluation des traitements en institution et determination des effectifs de per- sonnel requis. Ouelques autres exemples concernent !'utilisation de la classification au niveau superieur: politique nationale, enseignement et formation de professionnels, programmes de readaptation dans la communaute. Entin, une attention particuliere est apportee aux exemples d'utilisation de la classifica- tion pour la readaptation de groupes particuliers, tels les enfants, les handicapes mentaux, les cance- reux, les personnes agees et les patients des ser- vices de geriatrie. REFERENCES- REFERENCES 1. WORLD HEAL TH ORGANIZATION. International Classi- fication of Impairments, Disabilities, and Hand- icaps-a manual of classification relating to the consequences of disease. Geneva, WHO, 1980. ORGANISATION MONDIALE DE LA SANTE. Classification internationale des handicaps: deficiences, inca- pacites et desavantages - un manuel de classifi- cation des consequences des maladies. Paris, CTNERHI-INSERM, 1988. 2. UNITED NATIONS. World Programme of Action concerning Disabled Persons. New York, United Nations, 1983. 3. OE KLEIJN-DE VRANKRIJKER, M. W. & MULLER, M. Challenge of standardizing the measurement of consequences of disease and injury. In: Cote, R. A. et al. (eds), Role of informatics in health data coding and classification systems. Amsterdam, Elsevier, 1985. 4. WORKING GROUP ON CLASSIFICATION AND CODING. The /CIDH: a classification relating to the con- sequences of diseases. Zoetermeer, National Council for Public Health, 1989. Wld hlth statist. quan., 42 (1989) 5. WooD, P. H. N. Appreciating the consequences of disease: the International Classification of Im- pairments, Disabilities, and Handicaps. WHO Chronicle, 34: 376-380 (1980). WOOD, P. H. N. Comment mesurer les con- sequences de la maladie: la Classification inter- nationale des infirmites, incapacites et han- dicaps. Chronique OMS, 34: 400-405 (1980). 6. WAGSTAFF, S. The use of the International Classi- fication of Impairments, Disabilities, and Hand- icaps in rehabilitation. Physiotherapy, 68 (7): 233-234 (1982). 7. SCHUMACHER, K. The International Classification of Impairments, Disabilities, and Handicaps (ICIDH): relevance to physical therapy and rehabilitation. In: Proceedings of the 10th International Con- gress of the World Confederation of Physical Therapy, Sydney, May 1987. Sydney, 1987. 8. BANGMA, B. D. ET AL. Rehabilitation medicine: theory and practice. Rotterdam, Erasmus Uni- versity, 1988. - 156 - 9. LANKHORST, G. J. ET AL Preliminary experiences with WHO's ICIDH: a user's report. International rehabilitation medicine, 7 (2): 70-72 (1985). 10. J1wA-BOERRIGTER, H. ET AL Application of the ICIDH in rehabilitation medicine. International disability studies: (In press-Sous presse). 11. MINAIRE, P. The development of the International Classification of Impairments, Disabilities, and Handicaps (ICIDH) in France. In: Classification internationale des handicaps: du concept a /'application - Document preparatoire; choix d'articles concernant la classification des han- dicaps presentes par ordre alphabetique auteurs. Vanves, CTNERHI, 1988. 12. NADEAU, D. ET AL Classification des handicaps: apport de la convivialite en informatique hos- pitaliere. In: Classification internationale des handicaps: du concept a /'application - Docu- ment preparatoire; choix d'articles concernant la classification des handicaps presentes par ordre alphabetique auteurs. Vanves, CTNERHI, 1988. 13. FORD, B. International Classification of Impair- ments, Disabilities, and Handicaps: exercises in its applications in a hospital medical record. International rehabilitation medicine, 6 (4): 191- 193 (1984). 14. LAST, P. M. First experiences with ICIDH in Australia's largest nursing home. International rehabilitation medicine, 7 (2): 63-66 (1985). 15. COUNCIL OF EUROPE. A coherent policy for the rehabilitation of disabled people. Resolution AP (84) 3 adopted by the Committee of Ministers on 17 September 1984 at the 375th meeting of the Ministers' Deputies-A model rehabilitation pro- gramme for national authorities. Strasbourg, Council of Europe, 1984. 16. OFFICE DES PERSONNES HANDICAPEES DU QUEBEC. On equal terms; the social integration of hand- icapped persons; a challenge for everyone. Quebec, Office des personnes handicapees du Quebec, 1984. 17. F1NNSTAM, J. ET AL Evaluation of community- based rehabilitation in Punjab, Pakistan. I-Use of the WHO manual "Training disabled people in the community". International disability studies, 10 (2): 54-58 (1988). 18. GRIMBY, G. ET AL. Evaluation of community-based rehabilitation in Punjab, Pakistan. II-The preva- lence of diseases, impairments, and handicaps. International disability studies, 10 (2): 59-60 (1988). 19. FEDERAL WORKING GROUP ON REHABILITATION ET AL. [Rehabilitation of the disabled - guidelines for physicians]. Cologne, Deutscher Artzte Verlag, 1984. (In German). GROUPE DE TRAVAIL FEDERAL POUR LA REHABILITATION ET AL [La rehabilitaion des handicapes - direqtives pour les medecins]. Cologne, Deutscher Artzte Verlag, 1984. (En allemand). 20. PFEIFFER, J. Functional evaluation of cerebral palsy using the ICIDH. International rehabilitation medicine,8 (1): 11-14 (1986). 21. FERNGREN, H,. & LAGERGREN, J. Classification of handicaps in 6-7 year-old mentally retarded children; usefulness and inter-observer agree- ment of a child-adapted handicap code of WHO's ICIDH. International disability studies, 10 (4): 155-158 (1988). 22. SEIDEL, c. & TSCHERNER, u. Application of the Classification of Disabilities to children from 12 to under 16 years of age. International rehabilita- tion medicine, 7 (2): 73-75 (1985). 23. VOLKMANN, A. [Classification of oncology cases according to WHO, proposed rehabilitation and aspects of psychosocial cancer aftercare: a study of 100 patients at Cologne University Surgical Clinic]. Cologne, Cologne University Medical Faculty, 1985. (Diss. A). (In German). VOLKMANN, A. [Classification des cas de cancer d'apres /'OMS, rehabilitation proposee et aspects psychosociaux de la post-cure du can- cer: etude de 100 patients de la Clinique de chirurgie de l'Universite de Cologne]. Cologne, Faculte de medecine de l'Universite de Cologne, 1985. (Diss. A). (En allemand). 24. POHLMANN, U. [Classification of oncology cases according to WHO, and their proposed rehabili- tation: a study of 100 patients at Cologne Uni- versity's Gynaecology Clinic]. Cologne, Cologne University Medical Faculty, 1987. (Diss. A). (In German). POHLMANN, U. [Classification des cas de cancer d'apres /'OMS et leur rehabilitation proposee: etude de 100 patientes de la Clinique de gyneco- logie de l'Universite de Cologne]. Cologne, Faculte de medecine de l'Universite de Cologne, 1987. (Diss. A). (En allemand). 25. WASSENBERG, S. [Classification of oncology cases from the ear-nqse-and-throat department accord- ing to WHO's /CIDH codes and their rehabilita- tion]. Cologne, Cologne University Medical Fac- ulty, 1987. (Diss. A). (In German). WASSENBERG, S. [Classification des cas de cancer du departement d'oto-rhino-laryngologie d'apres /es codes C/H de /'OMS, et leur rehabilitation]. Cologne, Faculte de medecine de l'Universite de Cologne, 1987. (Diss. A). (En allemand). 26. GRIMBY, G. ET AL On the application of the WHO handicap classification in rehabilitation. Scan- dinavian journal of rehabilitation in medicine, 20 (3): 93-98 (1988). 27. ALARANTA, H. & KALLIO, v. The concept of con- sequences of disease in patients with low-back pain. International rehabilitation medicine, 8(1 ): 8-10 (1986). 28. PuROLA, T. A systems approach to health and health policy. Medical care, 10: 373-379 (1972). 29. DALGAARD, 0. z. & HORWITZ, N. The International Classification of Impairments, Disabilities, and Handicaps evaluated by EDP-based medical re- cord linkage in geriatric medicine. International disability studies, 9(3): 116-117 (1987). 30. BLACK, J. A. & CHAMPION, D. J. Methods and issues in social research. New York, Wiley, 1976. 31. SCHEELE, R. [Disabilities and handicaps of the elderly: a survey of the residents of an old people's and an old people's nursing home from the point of view of rehabilitation]. Cologne, Cologne University Medical Faculty, 1986. (Diss. A). (In German). SCHEELE, R. [lncapacites et desavantages des per- sonnes agees: etude des residents d'une maison de retraite et d'une c/inique pour retraites du point de vue de la rehabilitation]. Cologne, Faculte de medecine de l'Universite de Cologne, 1986. (Diss. A). (En allemand). Wld hlth statist. quart., 42 (1989) - 157 - USE OF THE WHO CLASSIFICATION IN ASSESSING THE PREVALENCE OF DISEASES, IMPAIRMENTS AND HANDICAPS IN PUNJAB PROVINCE, PAKISTAN Jane Finnstam,a Gunnar Grimbya & Saeeda Rashidb The Member States of the World Health Organization have agreed to include rehabilitation in the goal of health for all by the year 2000. Recognizing the great need for rehabilitation in developing countries, with predominantly rural populations having limited ac- cess to rehabilitation facilities, WHO developed a community-based rehabilitation (CBR) programme for integration within national primary health care programmes. According to CBR goals disabled per- sons should be able to look after themselves, move around the house and village, attend school, be employed and carry out household activities, enjoy family life and take part in community activities. The project reviewed here was undertaken as part of a feasibility study concerning this programme's ap- plication in Pakistan. The study was carried out in a village (population 4 521) some 34 km outside Lahore and in a slum area (population 2 342) in the same city. Disabled people were identified by local supervisors in accordance with the CBR manual which contains instructions and guidance on the identification of people requiring training or other rehabilitation measures, and on the conduct of a household survey. Local supervisors used a CBR questionnaire to identify those who had seizures (fits), those with difficulty in hearing, speaking, learning, moving, and seeing, and those with "strange" behaviour. A second questionnaire identi- fied those who could benefit from training or re- habilitation. The validity of the ascertainment proce- dure was established by qualified physicians who carried out a medical survey of the village using the International Classification of Diseases (ICD) and WHO's Classification of Impairments, Disabilities, and Handicaps (ICIDH-excluding the dimension of economic self-sufficiency). • Department of Rehabilitation Medicine, University Hospital, Giiteborg, Sweden. b Department of Community Medicine, Lahore, Pakistan. The comparison of prevalence estimates derived from disabilities identified by local supervisors, and those derived from impairments and handicaps assessed by physicians, revealed agreement. In par- ticular, it was found that the disability and handicap elements of the ICIDH were easy to administer and use for qualified staff. This article compares the prevalence rates of the village and the slum area studied. Results The most common diagnoses in the village were eye disorders, diseases of the musculoskeletal system, hearing disorders, and respiratory diseases. Infec- tious diseases such as tuberculosis, malaria, polio- myelitis, and gastrointestinal infections with diar- rhoea were also common. A similar spectrum was found in the urban slum although infectious dis- eases, endocrine disorders, diseases of the digestive system (including diarrhoea), bronchitis, and anae- mia were more common than in the village; on the other hand, no cases of poliomyelitis were found. Most of the people with eye disorders were elderly and had cataracts, which start 10-20 years earlier than in industrialized countries. The younger people in the village with eye disorders usually had eye infections which were badly treated or untreated. Impairments were somewhat more common in the urban slum than in the village, with prevalence figures of 14% and 11%, respectively. The common- est problems were ocular and skeletal impairments, as would be expected from the disease diagnoses. Investigation of disablement (Table 1), using the CBR approach, indicated about the same prevalence of disabilities in the rural area (262/4 521) and in the urban slum (130/2 342) with a significantly lower prevalence of seeing disabilities in the village. In- vestigation of disablement was undertaken through 23 questions about primary and secondary activities TABLE 1. DISABLEMENT IDENTIFIED BY LOCAL SUPERVISORS, COMMUNITY-BASED REHABILITATION STUDY, PUNJAB, PAKISTAN, 1982-1985 TABLEAU 1. INCAPACITES DETERMINEES PAR LES CONTROLEURS LOCAUX, ETUDE SUR LA READAPTATION A BASE COMMUNAUTAIRE, PENDJAB, PAKISTAN, 1982-1985 Disablement - lncapacites Seeing - Troubles de la vision Moving - Troubles moteurs Speech and hearing - Troubles de l'elocution et de !'audition Seizures - Convulsions Strange behaviour - Anomalies du comportement Learning - Troubles de l'apprentissage Other - Autres Multiple - lncapacites multiples • Significant difference (p < 0.05) - Difference significative (p < 0,05). Wld hlth statist. quan., 42 (1989) Rural (262 cases/cas) Number % of population Nombre % de la population 88 55 46 22 11 0 25 15 1.95 1.22 1.02 0.49 0.24 0 0.55 0.33 Urban slum - Urbain pauvre (130 cases/cas) Number % of population Nombre % de la population 23 18 26 14 3 2 32 12 0.98" 0.77 1.11 0.60 0.13 0.09 1.37" 0.51 - 158 - of daily living (ADL), asked by the local supervisors and later by occupational therapists in an evaluation group. It was felt that the use of ICIDH would not have yielded more information. The prevalence of handicap, according to ICIDH specifications, was 6.0% and 4.5% in the village and urban slum re- spectively, i.e. it was lower than that for impair- ments. The most common handicaps (Fig. 1) related to mobility, occupation, and social integration; for all aspects, more severe degrees were recorded overall in the village than in the urban slum. This did not systematically apply for all age groups or for all causes, and was more striking for rheumatism, pul- monary diseas!il, and eye disorders (Fig. 2). Table 2 shows the broad categories of disease responsible for handicap, the most frequent being eye disorders and respiratory and mental diseases and, in the village, disorders of the musculoskeletal system. Po- liomyelitis and epilepsy usually give rise to hand- icap; handicaps linked to diseases of the eye and of the genitourinary and musculoskeletal systems were more frequent in the village than in the urban slum. FIG.1 OVERALL DISTRIBUTION OF SUBJECTS FOR FIVE DIMENSIONS OF THE WHO CLASSIFICATION OF HANDICAPS, AS PERCENTAGES• Orientation DISTRIBUTION GENERALE DES SUJETS SUR CINQ AXES DE LA CLASSIFICATION OMS DES DESAVANTAGES, EN POURCENTAGES• '!. 80 '!. 80 Physical independence lndependance physique Mobility - Mobilite Occupational - Occupations 60 .,. Social integration - Integration sociale • Rural D Urban slum - Urbain pauvre Source: Reference (3) - Reference (3). a 0: no handicap; 4+: severe handicaps - 0: pas de desavantage; 4+: desavantages prononces. Note: Please note scale differences - Nater les differences d'echelle . TABLE 2. DIAGNOSES IN PERSONS WITH HANDICAP,• COMMUNITY-BASED REHABILITATION STUDY, PUNJAB, PAKISTAN, 1982-1985 TABLEAU 2. DIAGNOSTICS POSES CHEZ DES HANDICAPES,• ETUDE SUR LA READAPTATION A BASE COMMUNAUTAIRE, PENDJAB, PAKISTAN, 1982-1985 Rural Urban slum - Urbain pauvre (313 cases/cas) (102 cases/cas) Disease type - Type de maladie Number % of population Number % of population Nombre % de la population Nombre % de la population Tuberculosis - Tuberculose 13 0.27 5 0.21 Poliomyelitis - Poliomyelite 14 0.31 0 ob Other infections - Autres infections 10 0.22 4 0.17 Endocrine - Endocrinopathie 7 0.15 1 0.04 Blood - Affections du sang 4 0.09 6 0.26 Mental - Troubles mentaux 29 0.66 17 0.73 Epilepsy - Epilepsie 8 0.18 2 0.09b Nervous system, other - Autres affections du systeme nerveux 14 0.31 6 0.26 Eye - Affections de l'ceil 104 2.21 23 0.98b Ear - Affections de l'oreille 22 0.49 8 0.34 Circulatory - Troubles circulatoires 12 0.27 5 0.21 Respiratory (excluding tuberculosis) - Affections respiratoires (a !'exclusion de la tuberculose) 30 0.69 23 1.07 Digestive - Troubles de la digestion 16 0.35 8 0.34 Genitourinary - Affections genitourinaires 12 0.27 0 ob Skin - Afffections dermatologiques 6 0.13 2 0.09b Musculoskeletal - Affections osteomusculaires 52 1.13 7 0.30 Congenital anomalies - Anomalies congenitales 6 0.17 4 0.17 Injuries - Traumatismes 10 0.22 4 0.17 8 Only conditions with a duration of one month or more are taken into account - II n'est tenu compte que des affections d'une duree egale ou superieure a un mois. O Significant difference (p < 0.05) - Difference significative (p < 0,05). Wld hlth statist. quart .• 42 (1989) - 159 - FIG.2 DISTRIBUTION OF SUBJECTS FOR FIVE DIMENSIONS OF THE WHO CLASSIFICATION OF HANDICAP AS PERCENTAGES, ACCORDING TO ETIOLOGICAL DISORDER• DISTRIBUTION DES SUJETS SUR CINQ AXES DE LA CLASSIFICATION OMS DES DESAVANTAGES EN POURCENTAGES, D'APRES LES FACTEURS ETIOLOGIQUES• % A. LUNG DISORDERS - TROUBLES PULMONAIRES Orientation 100~~~~~~~~~~~~~~~~ 80 60 40 20 0 2 3 4 5 6 8 9 % Social integration - Integration sociale 100 80 60 40 20 0 2 456789 B. Eve DISORDERS - TROUBLES OCULAIRES Orientation % 100-.--------------~ 80 60 40 20 0 2 3 4 5 6 7 8 9 % Social integration - Integration sociale 50 40 30 20 10 0 23456789 C. RHEUMATIC DISORDERS - TROUBLES RHUMATISMAUX % Orientation 100~~~~~~~~~~~~~~~~ 80 60 40 20 0 2 3 4 6 7 8 9 % Social integration - Integration sociale 100 80 60 40 20 0 2 3 4 5 6 7 8 9 % Occupational - Occupations 100~~~~~~~~~~~~~~~ 80 60 40 20 0 2 3 4 6 7 8 9 % Mobility - Mobilill! 100 ..... ~~~~~~~~~~~~~~~ 80 60 40 20 0 2 3 4 5 6 7 8 9 % Occupational - Occupations so~~~~~~~~~~~~~~~ 40 30 20 10 0 23456789 % Mobility - Mobilite 50-r---------------, 40 30 20 10 0 23456789 % Occupational - Occupations so~-------------~ 40 30 20 10 % 0 2 3 4 6 8 9 Mobility - Mobilite so~~~~~~~~~~~~~~~~ 40 30 20 10 0 2 3 4 5 6 7 8 9 % Physical independence - lndependance physique 100 ..... ~~~~~~~~~~~~~~~ 80 60 40 20 0 2 3 4 5 6 8 9 • Rural (n = 22) O Urban slum - Urbain pauvre (n = 21) WH089747 % Physical independence - lndependance physique 100 ..... ~~~~~~~~~~~~~~~ 80 60 40 0 2 3 4 5 6 8 9 • Rural (n = 104) O Urban slum - Urbain pauvre (n = 23) WH089748 % Physical independence - lndependance physique 100-.-~~~~~~~~~~~~~~ 80 60 40 20 0 2 3 4 5 6 8 9 • Rural (n = 52) O Urban slum - Urbain pauvre (n = 7) WH089749 a See details under Fig. 1. There is not necessarily an absolute correspondence between each disorder and each handicap, hence some discordance in the number of patients in Figs. 1 & 2 - Vair details sous la figure 1. La correspondance n'est pas necessairement absolue entre chaque cause et chaque d0savantage, d'oU de possibles discordances dans le nombre de patients des figures 1 & 2. Note: Please note scale differences - Noter les differences d'echelle. Wld hlth statist. quart., 42 ( 1989) 160 - Discussion This study is a first attempt to derive rough preva- lence estimates for diseases, impairments and hand- icaps in the area. Poliomyelitis was not found in the slum area, immunization having been introduced there earlier (in the village, it was started only during the period of the project). The prevalence of several groups of diseases was higher in the urban slum than in the village, although some conditions may have been underestimated. Mental diseases, for example, are not easily recognized in their milder forms, either by the local population or physicians. Within these limitations, more negative factors may be affecting health status in the slum area. Thus the higher frequency of infectious and respiratory dis- eases could be due to environmental factors. In both study areas, diseases of the eye and ocular impairments were most common, though they were more likely to give rise to handicap in the village; the same was true of musculoskeletal disorders. In general, impairments resulted in handicap in somewhat less than half the cases, though the de- gree of handicap was generally greater in the village. Acknowledgement The study on which this article is based was suppor- ted by WHO, and part of the statistical analysis was supported by a grant from the Coordinating Board of the Swedish Research Council. BIBLIOGRAPHY- BIBLIOGRAPHIE 1. HELANDER, E. ET AL. Training disabled people in the community-a manual on community-based re- habilitation for developing countries. Geneva, World Health Organization, 1983. (A cooperative programme for the United Nations Decade of Disabled Persons). 2. F1NNSTAM, J. ET AL Evaluation of community-based rehabilitation in Punjab, Pakistan-I. Use of the WHO manual "Training disabled people in the community". International disability studies, 10 (2): 54-58 (1988). 3. GRIMBY, G. ET AL Evaluation of community-based rehabilitation in Punjab, Pakistan-II. The preva- lence of diseases, impairments, and handicaps. International disability studies, 10 (2): 59-60 (1988). 4. WORLD HEALTH ORGANIZATION. Manual of the inter- national statistical classification of diseases, in- juries and causes of death. Ninth Revision. Geneva, WHO, 1977. ORGANISATION MONDIALE DE LA SANTE. Manuel de la classification statistique internationale des mala- dies, traumatismes et causes de deces. Neuvieme revision. Geneve, OMS, 1977. 5. WORLD HEALTH ORGANIZATION. International Classifi- cation of Impairments, Disabilities, and Hand- icaps-a manual of classification relating to the consequences of disease. Geneva, WHO, 1980. ORGANISATION MONDIALE DE LA SANTE. Classification internationale des handicaps: deficiences, inca- pacites et desavantages - un manuel de classifi- cation des consequences des maladies. Paris, CTNERHI-INSERM, 1988. Wld hlth statist. quart., 42 (1989) - 161 - USING THE INTERNATIONAL CLASSIFICATION OF IMPAIRMENTS, DISABILITIES, AND HANDICAPS IN SURVEYS: THE CASE OF SPAIN Pilar Gomez Rodrigueza The demand for information on the number, char- acteristics and situation of people suffering from mental, physical and sensory limitations has been strongly felt in Spain in recent years, both socially and in the institutions whose responsibility lies in these areas. Realizing the need to try to quantify a phenomenon whose true dimensions were unknown, the Spanish National Institute of Statistics (INE) included a ques- tion on the subject in its census surveys in 1950, 1960 and 1981. However, a summary analysis of the results shows clearly that the figures obtained from the self-classification procedure which must be fol- lowed in a census substantially underestimate the severity of the situation. It was therefore felt that a sample survey carried out by interviewers would permit greater conceptual precision and uniform treatment of the total popula- tion in accordance with the relevant methodological definitions retained. Objectives The objectives which the survey of disabilities, im- pairments and handicaps carried out in Spain in 1986 attempted to address were as follows: • To obtain an estimate of the total number of people with some form of disability, this being understood as a serious limitation permanently affecting their activity and originating from an impairment, and to define the nature of these disabilities. • To identify the different types of impairments which give rise to these disabilities. • To start developing an approach for identifying the causes which have given rise to these impair- ments. • To estimate the number of people who, as a result of an impairment, have some form of handicap, and to analyse the nature of these handicaps. The major difficulty in meeting these objectives was the considerable confusion in terminology and con- cepts both at the national and at the international level. An adequate frame of reference was needed to put into perspective such terms as deficient, sub- normal, diminished, handicapped, etc., which are often used as synonyms, so as to establish an order of causality between the consequences which may be produced by disease, as defined in its broadest sense, i.e. including accidents and congenital abnor- malities. • Chief, Health Statistics Service, National Institute of Statistics, Madrid, Spain Wld hlth statist. quart., 42 (1989) The WHO Classification The framework mentioned above was provided by the International Classification of Impairments, Dis- abilities, and Handicaps (ICIDH) developed by WHO and published in 1980 in English (1). This classifica- tion was translated into Spanish by the National Institute of Social Services (INSERSO) and published in 1983 (2). Leaving aside the fact that the original classification, as well as the terminology used in Spanish, may be subject to discussion and improvement, as in any endeavour of an experimental nature, this translation effort has obviously helped to clarify the situation in two respects. In the first place, the consequences of diseases are structured for the first time. Secondly, the classifica- tion distinguishes between the three levels at which these consequences are observed: impairment (loss or abnormality of an organ or of the intrinsic func- tion of that organ); disability (restriction or lack-resulting from an impairment-of ability to perform an activity in the manner or within the range considered normal, and thus the consequence which the disease produces at the level of the person); and handicap (disadvantage which results for the individual from an impairment or disability, and which limits or prevents the fulfilment of a role that is normal in terms of age, sex, and socio- cultural factors). Adaptation of the Classification The final impetus for this survey was thus provided by the availability of definitions of impairment, dis- ability and handicap, and the possibility of ordering these constituents of the consequences of disease in a sequence of causation, although this did not solve all the problems. Although the method used for the survey followed as closely as possible the guidelines proposed by WHO for the definition, content and classification of these three levels, some modifications were neces- sary to ensure that the survey would be feasible, comprehensive in scope and fully understood. On the one hand, the broad scope and complexity of this classification meant that it was impossible to obtain data on each and every item contained therein. It was necessary to simplify the classifica- tion even at the cost of limiting content. At the same time, the definitions of the content of each item had to be adapted to language which would be fully understood by the respondents of all cultural levels who would ultimately be replying to the questions. - 162 - A number of decisions were taken to this end. The first was to begin the survey with disabilities rather than with impairments, although impairments are the most immediate consequence of disease. In practice, although a person may have innumerable impairments, not all of them are of sufficient seri- ousness or duration to give rise to disability and hence they were not all of equal interest for the survey. Questions on impairments are also very difficult to answer, since the information is elicited from families by an interviewer and not by a medical team which would be able to carry out standardized diagnostic tests; both the type and degree of impair- ment reported might therefore be incorrect. The starting point chosen for the survey was there- fore disability, which made for greater increased objectivity in the replies given but limited the scope of the study. Disabilities Although the definition of the term "disability" cited above in the objectives of the survey is essentially the same as that of the ICIDH, certain limitations were imposed for the purposes of this study. In the first place, only serious disabilities were inclu- ded, i.e. those which severely limit the activity of the individual affected. In establishing which disabilities are or are not serious, we attempted to reflect the views of Spanish society as to what does or does not constitute a serious activity restriction, so that it is disabilities as perceived by the Spanish population that have been quantified. Obviously, the number of activities a person is able to carry out is very large; so, consequently, is the number of potential disabilities. It was therefore necessary to reduce this number to those disabilities which are potentially common to all and which represent all potential human skills and behaviour. The major groups of disabilities retained are listed in Box 1. Box 1. Major groups of disabilities included in the survey of disabilities, impairments and handicaps, Spain, 1986 1. Disabilities in seeing 2. Disabilities in hearing 3. Disabilities in speaking 4. Other communication disabilities 5. Disabilities in personal care 6. Disabilities in walking 7. Disabilities in climbing stairs 8. Disabilities in running 9. Disabilities in going out of the house 10. Disabilities in activities of daily living 11. Disabilities in dependence and resistance 12. Environmental disabilities 13. Behavioural disabilities in relation to oneself 14. Behavioural disabilities in relation to others Some of these groups were subdivided in terms of their seriousness, giving a total of 28 categories of disabilities. Only those disabilities which permanently affect the activity of the individual were retained. A disability was deemed permanent when its very nature im- plied limitations, such as those which result from mental retardation. When permanence was not evi- dent, a time limit was set and a disability was considered permanent when the time for which it had been suffered plus the time it was expected to last were equal to at least one year. This excluded, for example, people with a walking disability as a result of a fracture which could be corrected by immobilization of the leg for a short period. Following the pattern of ICIDH, only disabilities orig- inating in an impairment were investigated (Box 2). Exceptions were nevertheless made for certain dis- abilities which do not arise out of clearly definable impairments but which result from degenerative pro- cesses in which the age of the individual is a deci- sive factor, i.e. those which are due to senility. This was decided because it was felt that this information might be of considerable sociocultural interest for the purposes of comparison, either with other coun- tries or retrospectively in our own country. It might, for example, be possible to see whether the number of over-65s with a given disability declines over time or remains at the same level. Disabilities were investigated even when they could be corrected with some external device, mechanism or prosthesis, or with the help of another person. The only exception was that of seeing disability: in this case, only those disabilities which subsist with spectacles or contact lenses were included. Of the population investigated (38 341130), 15% pre- sented a disability. Disability prevalence increased rapidly above the age of 44 (Fig. 1). Above this age, disability prevalence is also higher among women than among men, the difference reaching 5-10 per- centage points at age 65 and above. Together with the higher proportion of women in the higher age groups, this gives an overall crude rate of disability among women higher than that among men (16.5% vs.13.3%). This difference per- sists even when the rates are standardized for age (15.7%, 14.8% respectively). A preliminary analysis tends to indicate that disability prevalence is higher among the lower socioeconomic strata, and among persons with limited formal education, a di·stribution pattern also observed in other countries (3). Box 2. Types and prevalence of disabilities, survey of disabilities, impairments and handicaps, Spain, 1986 Disability Seeing Hearing Speaking Other communication Personal care Walkinga Climbin~ stairsa Running Going out of the home Activities of daily living Dependence and resistance Environmental Behavioural (self) Behavioural (others) a Significantly higher in females. b Significantly higher in males. 1 Prevalence % 2.4a 2.6a 0.5b 0.6 1.1 ~ 10.5 J 2.1a 2.3a 3.5 0.7 1.0 0.8 Wld hlth statist. quart., 42 (1989) - 163 - FIG. 1 NUMBER OF PERSONS WITH DISABILITIES PER 1000 POPULATION, BY AGE GROUP AND SEX PERSONNES HANDICAPEES POUR 1000 HABITANTS PAR GROUPE D'AGE ET PAR SEXE 1 OOO 900 800 700 600 "' i E 500 c LU "O c "' 400 "' ::, 0 £ ii; c. 300 ii; .0 E ::, z 200 100 ... 0 Females - Sexe f0minin - Males - Sexe masculin - • • "' "' M I ... N .;, I ... "' .;, N I ... "' .;, "' ,_ ,_ ,_ I- ,___ , _ ,___ ,_ ,_ ,t, co Age group - Groupe d'age Impairments The ability or inability to perform a particular activity is easily recognized by subjects in a survey, making disabilities relatively easy to identify. This is not the case for the definition of impairment offered by WHO, which does not make for easy identification of impairments. Often in practice, the manifestations, signs or symptoms of disease in an organ or the function of an organ cannot be detected by the person affected, but need to be diagnosed pro- fessionally. Moreover some patients may not have been told the truth about their disease or they may fail to understand the real significance of the diagnosis. These considerations and the objectives of the study led to the use of a method which diverges even further from the classifications and definitions of impairments established by WHO than was the case for disabilities and handicaps. It was decided to impute each disability to one impairment only despite the fact that an impairment often entails more than one disability (Fig. 2). Much information may have been lost as a result of this simplification, but it was felt that the complications which might arise both in the gathering of data and in their interpretation outweighed any possible gains. Wfd hfrh s tatist. quart., 42 ( 1989) In the case of a disability that could have been produced by more than one impairment, it was decided to recognize the impairment which the dis- abled person (or his/her spokesman) considered to be the fundamental cause of the disability which had been recognized. If this was unknown, the most long-standing impairment was selected. Bearing in mind that it might sometimes be difficult for the informant to know the real origin of his/her disability, the following guidel ines were developed for interviewers. 1. When the disability was the result of a time- limited disease which had resolved or was no longer evolving but had left some sequelae, it was considered to be related to the organ, system or tract in which the sequelae had occurred. For ex- ample, a walking disability due to an episode of poliomyelitis from which the patient had recovered was cons idered as resulting from an impairment of the locomotor system; a hearing disability observed as a sequela of mening itis, from a hearing impair- ment. 2. When the disability was the result of a degenera- tive and progressive disease, i.e. a process which was not completed, but still evolving, the . impair- ment considered was that of the relevant system, irrespective of the sequelae in any particular organ. - 164 - FIG. 2 MEAN NUMBER OF DISABILITIES GENERATED BY EACH TYPE OF IMPAIRMENT NOMBRE MOYEN D'INCAPACITES ENTRAINEES PAR CHAOUE TYPE DE DEFICIENCES 8~------------------------------- 1----- 6-N---- 5----- 4. I- 3 I- 2 - - - 0 Mixed - Mixtes Mental - Psychiques For example, a seeing disability caused by diabetes was considered to be due to an endocrine-metabolic impairment, and a walking disability arising from Parkinson's disease to an impairment of the nervous system. 3. There is a third case in which a disability might be produced by a long but curable disease, so that the sequelae of the disease appear at the same time as the disease continues to have a direct effect on an organ or system. These sequelae generally affect the same organ as the disease and thus the two pro- cesses lead to the same impairment. For example, a running disability caused by pulmonary tuberculosis was considered to be due to an impairment of the respiratory tract, both when the patient was still suffering from the disease and when he/she had recovered, but was left with pulmonary fibrosis which made running impossible. Thirty-two types of impairments were considered in the study; 31 of them were grouped under four major headings: mental, sensory, physical, mixed. A fifth category, "no impairment in particular", cover- ed all those individuals who reported some disability which could not be linked to any one of the impair- ments included in the four major groups. This cat- egory would include, for instance, a running dis- ability or the disability of being housebound in the case of some elderly people. One of the greatest difficulties in dealing with im- pairments was that in some cases, as with sensory impairments (sight and hearing), the terminology of impairment was practically identical with that of the corresponding disabilities. The concepts are never- ~ " c:: 'C ,!: J5 ~ I-- I ~ ~ ~ ~ " 0 "' "' c:: " "' Sensory- Sensorielles r !!? :, s B E 0 8 E .2 § ~ ..J ~ "' c. c. ,<( I gi (J "i c f/) .~-~ ~ ~-= C' .r;•Q) ·- o.:o ~ ~ "',,:; " " c. .t::!, -:, O<( Physical - Physiques theless distinct, since, for example, the disability of being "totally blind" may be due to the impairment of "total blindness" or to an "endocrine-metabolic" impairment. Similar examples could be quoted in the case of hearing. Special training was given to the interviewers to help them deal with the difficulties outlined above. This was done with the help of a videocassette which explained all the concepts involved in the method and illustrated the best approach to adopt in the households interviewed. An analysis of impairments and disabilities, carried out (separately for populations 6-64 and 65+) for the different administrative areas of the country, evi- denced considerable differences between these areas; on the whole, middle-sized towns appear to have lower rates of disability and impairments than either the predominantly rural areas or the major towns. Handicaps Handicaps were considered in the light of the six survival roles described in the ICIDH: orientation, physical independence, mobility, occupation, social integration and economic self-sufficiency. The def- initions used for these concepts were the same as those established by WHO. However, in view of the fact that there is room for considerable subjectivity in replies to self- assessment questions on handicap, each type of handicap was described in detail in order to deter- mine the significance of the results. Wld hlth statist. quart., 42 (1989) - 165 - Some handicaps related to social integration and economic self-sufficiency are not accompanied by an incapacity and/or disablement: for example, people with an economic or financial handicap in the ab- sence of a deficiency, and who live in marginal conditions. Such cases were not included in the study. In the case of handicaps of orientation, physical independence or mobility, only those people unable to manage by themselves or with the help of some kind of appliance and needing the assistance of another person were taken into account. The social integration handicap was limited to those who were unable to play their social role outside the family circle. Formal application for some form of assistance was a prerequisite for recognition of an economic self- sufficiency handicap, so that it was not left solely to the discretion of interviewees to judge whether or not their situation enabled them to subsist independ- ently. The mean number of handicaps per disabled person varies according to age, with a trough in the ages 45-60 and a maximum after age 70 (Fig. 3). Other aspects of the survey The use of the ICIDH in different age groups present- ed a further difficulty for the study. Children with a recognized impairment may not yet show any sign of disability although its occurrence can be predicted with certainty. Moreover, it is im- possible to determine whether an impairment of the locomotor system in an infant (under 1 year) will give rise to a walking disability. Some impairments, such as different forms of mental retardation, are very difficult to detect in very young children. Similarly, some of the items listed in the ICIDH are concomitant with advanced age. For example, the investigation of running disabilities in the very old would be inappropriate and provide a rather misleading picture. Consequently the survey was divided into three parts, one for each age group: children under 6, the population aged 6-64, and those over 65, for whom a different analytical interpretation of the results is required. To overcome the problem with children, a further category entitled "future disabilities" was added to the 14 major groups of disabilities mentioned above, to include children under 6 who had not yet dev- eloped any manifest disability but who would cer- tainly do so in the future as a result of an impair- ment. A total of 20 949 such cases were identified. It must be emphasized that the disabilities, impair- ments and handicaps which were analysed in this survey were not only studied as such, but also in relation to other health, social, economic and cul- tural variables which made possible a more precise assessment of Spanish society in terms of the WHO International Classification of Impairments, Dis- abilities, and Handicaps. In addition to factors such FIG.3 MEAN NUMBER OF HANDICAPS PER DISABLED PERSON NOMBRE MOYEN D'INCAPACITES PAR PERSONNE HANDICAPEE 2.,....~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~-, 1,9 1,8 1,7 1,6 1,5 1,2 1,1 1 0,9 0,8 0,7 0,6 0,5 0,4 0,3 0,2 0,1 0 .,. -co Wld hlth statist. quart., 42 ( 19891 .,. .,. .,. C')I r? "!" LO LO LO N M .,. ..,. Cl) ..,. Cl) v IQ ~ ~ ":' ":' ~ + LO LO ~ 0 LO 0 LO .,. LO ...... ...... 00 00 Age group - Groupe d'age - 166·- as age, sex, and socioeconomic situation, pre- liminary analyses (4) concentrated on factors such as birth rank, age of mother at birth, and type of delivery. Conclusion The survey of disabilities, impairments and hand- icaps carried out in Spain was largely based on the ICIDH. However, the classification cannot be used in this type of statistical work without adaptation, at least in its present form. Some structured presenta- tion of the minimum common variables which could be used in surveys in different countries, and the type of adaptations encountered in individual sur- veys should facilitate comparisons at the inter- national level. SUMMARY A survey was conducted in Spain in 1986 to estimate the number of people with disabilities and to identify the impairments which had given rise to them. The survey also set out to identify the causes of these impairments and to analyse the nature and extent of the handicaps resulting from these impairments and disabilities. The frame of reference for the survey was the WHO International Classification of Impairments, Dis- abilities, and Handicaps (ICIDH), which was adapted in a number of ways. The most radical departure was to begin the survey with disabilities, which were considered easier to identify. 15% of the population presented a disability, the rate mostly increasing with age, with substantial differences between the sexes and pronounced gradients in relation to socioeconomic status in some cases. Analysis of disabilities and impairments by administrative area also revealed some significant geographical vari- ations. The study of handicaps posed some part- icularly complex problems of methodology. In conclusion, the work of the Spanish survey was facilitated by the use of the ICIDH, but this classifica- tion requires several substantial modifications before it can be systematically used in surveys of this type. RESUME Utilisation de la Classification internationale des handicaps pour les enquites: l'exemple de l'Espagne Une enquete menee en 1986 en Espagne a eu pour but de fournir une estimation du nombre de person- nes atteintes d'incapacites et d'identifier les deficien- ces a l'origine de ces incapacites. En outre, cette enquete devait permettre d'identifier les causes de ces deficiences et d'analyser la nature et !'importan- ce des handicaps consecutifs aux deficiences et inca- pacites. L'enquete a utilise le cadre de la Classification inter- nationale des handicaps (CIH) presentee par l'OMS, avec une serie d'adaptations. La plus importante de ces adaptations fut d'axer le debut de l'enquete sur les incapacites, considerees comme plus faciles a identifier. 15% de la population presente une incapa- cite, avec en general un taux croissant par rapport a l'age, et d'importantes differences selon le sexe, ainsi que, dans un certain nombre de cas, des gradients marques par rapport au niveau socio- economique. L'analyse des incapacites et des defi- ciences par zone administrative a permis en outre de mettre en evidence des variations geographiques significatives. L'etude des handicaps a pose des problemes de methode particulierement complexes. En conclusion, !'utilisation de la CIH a facilite le travail d'enquete en Espagne, mais cette classifica- tion doit beneficier de plusieurs adaptations impor- tantes pour que puisse etre systematise son emploi dans les enquetes de ce type. REFERENCES- REFERENCES 1. WORLD HEAL TH ORGANIZATION. International Classifi- cation of Impairments, Disabilities, and Hand- icaps-a manual of classification relating to the consequences of disease. Geneva, WHO, 1980. ORGANISATION MONDIALE DE LA SANTE. Classification internationale des handicaps: deficiences, inca- pacites et desavantages - un manuel de classifi- cation des consequences des maladies. Paris, CTNERHI-INSERM, 1988. 2. ORGANIZACION MUNDIAL DE LA SALUD. C/asificaci6n internacional de deficiencias, discapacidades y minusvalias - manual de clasificaci6n de /as consecuencias de la enfermedad. Madrid, lnsti- tuto nacional de servicios sociales, 1983. 3. MACKENBACH, J. P. Health care policy and regional epidemiology: international comparisons and a case study from the Netherlands. Social science and medicine, 24 (3): 247-254 (1987). 4. NATIONAL INSTITUTE OF STATISTICS. [Survey on dis- abilities, impairments and handicaps: A first com- ment on the results]. Madrid, National Institute of Statistics, 1987. (In Spanish). INSTITUT NATIONAL DE STATISTIOUE. [Enquete sur Jes incapacites, Jes deficiences et Jes desavantages - un premier commentaire sur Jes resultats]. Madrid, lnstitut national de statistique, 1987. (En espagnol). Wld hlth statist. quart., 42 (1989) - 167 - LA MESURE DU HANDICAP DANS LA COMMUNAUTE: UNE MICRO-ENOUETE DANS UN VILLAGE FRANCAIS8 Pierre Minaire,b Jean Cherpin,c Jean-Louis Floresd & Didier Webere De nombreuses institutions par le monde ant cha- cune leur propre definition du handicap, qui depend en general d'objectifs varies. Mais aucun des classe- ments qui en decoulent n'est en mesure de rendre parfaitement compte de la realite du handicap, tant pour la personne qui le vit, qu'au sein d'une popula- tion donnee. L'erreur la plus repandue consiste a considerer le handicap comme une constante, alors qu'il est variable a la fois dans l'espace et dans le temps. Ainsi, un ampute tibial appareille n'est pas plus limite pour prendre l'autobus qu'une personne porteuse d'un platre a la suite d'une entorse. De plus, l'ampute n'est limite que dans certaines situa- tions, et pas du tout dans d'autres. Sur le plan phenomenologique, le handicap est en fait la resultante d'une confrontation entre les aptitu- des fonctionnelles d'une personne et les caracteristi- ques d'un environnement donne (1,2). Cette defini- tion est bien celle du desavantage social vecu et tient compte a la fois de l'incapacite, done du deficit fonctionnel, et de l'environnement global. Les personnes handicapees sont extremement favo- rables a une integration sociale aussi complete que possible et leur discours ne permet pas d'en dou- ter (3). Elles mettent l'accent sur la prevention, et la compensation du desavantage, tout autant que sur la prevention des maladies potentiellement handica- pantes. Elles sont done concernees par !'ameliora- tion de l'environnement, condition importante de !'attenuation des desavantages. L'evaluation tri-dimensionnelle proposee par !'Orga- nisation mondiale de la Sante (OMS) (4) est aussi un moyen d'analyse de la prevalence du handicapt dans une communaute. II faut en effet tenter d'apprecier qui et combien de personnes sont handicapees dans les activites de la vie quotidienne. Les activites de la vie quotidienne - au mieux, de la vie courante - correspondent bien a I' incapacite dans la definition proposee par l'OMS. Les activites instrumentales de la vie quotidienne, plus complexes, sont proches de la definition du handicap au desavantage social (5), et peuvent etre approchees par des questionnaires appropries. Nous avons choisi de mener une etude ergono- mique transversale de certains aspects de I' incapaci- •rravaux du Groupement d'interet public Effets de /'exercice Faculte de medecine, Saint-Etienne, France. ' b Departement de reeducation et readaptation fonctionnelles Centre hospitalier et universitaire, Hopital Bellevue, Saint-Etienne'. France. cservice de kinesitherapie, Hopital Henry Gabrielle, Saint-Genis- Laval, France. d Laboratoire d'ergonomie, Universite Claude Bernard Lyon I, Villeurbanne, France. •service d'urgence et de medecine legale, Hopital Edouard Herriot, Lyon, France. I Au sens de disablement en anglais. Rapp. trimest. statist. sanit. mond., 42 (1989) te au sein d'un village, afin de recueillir des donnees aussi fiables et precises que possible avec les objec- tifs suivants: • obtenir une image fonctionnelle de la population du village et en demontrer la faisabilite; • comparer !'auto-evaluation de la capacite fonc- tionnelle des habitants et leurs performances; • analyser les effets de l'age sur les capacites, en tentant de determiner des indicateurs syntheti- ques utiles en matiere d'etude du vieillissement fonctionnel. Methode Nous avons choisi avec l'aide de l'lnstitut national de la statistique et des etudes economiques (INSEE) le village de Saint-Cyr-sur-le-Rhone, 532 habitants en 1984, representant une communaute homogene semi-rurale, legerement plus jeune que la moyenne nationale fran9aise. Le choix, l'elaboration, la validation et la realisation des tests concernant les trois grands groupes de fonctions de la vie courante (ambulation-prehension- communication) ant ete realises dans le cadre des laboratoires de l'lnstitut national de recherche sur les transports et leur securite (INRETS), institution interessee par l'amenagement de l'environnement des systemes de transport collectif. Les tests retenus sont resumes dans le tableau 1 avec leur correspon- dance du code «lncapacite)) de la Classification inter- nationale des handicaps: deficiences, incapacites et desavantages (CIH). lls derivent tous de situations de la vie courante rassemblees dans un meme lieu dans le village meme sur une surface couverte de 600 m2 environ. La preparation sur le terrain a dure 10 mois, aupres des elus, puis des associations, enfin aupres de chaque habitant quel que soit son age. Elle a consiste en une information ecrite, audio-visuelle et orale sur l'etude, ses objectifs, et ses moyens. Ainsi, 94,7% des habitants (504 personnes) ant parti- cipe a l'etude qui s'est deroulee sur un mois plein, tous les jours. Les tests ant dure en moyenne 1 h- 1 h 30, parfois 2 h-2 h 30 pour les enfants et les personnes a mobilite reduite. Quatre experimenta- teurs qualifies (kinesitherapeutes de plus de 10 ans de pratique) sous la responsabilite directe d'un me- decin, d'un ergonome, d'un kinesitherapeute-chef et d'un psychologue ant assure leur deroulement. Les resultats ant ete traduits soit en termes de possibili- tes, limitations, et impossibilites, soit en mesure de force, de duree, au de distance. La saisie des donnees et leur traitement informa- tique ant ete effectues en conformite avec les regles fixees par la Commission nationale informatique et libertes (CNIL). Le traitement informatique a permis un tri a plat des donnees recueillies et des comparai- sons croisees. - 168 - TABLE 1. SUMMARY OF TESTS CARRIED OUT BY THE WHOLE SAMPLE AND CORRESPONDENCE WITH THE ICIDH DISABILITY CODE TABLEAU 1. RESUME DES TESTS EFFECTUES PAR L'ENSEMBLE DE L'ECHANTILLON ET CORRESPONDANCE AVEC LE CODE INCAPACITE DE LA CIH Situation Walking 500 m on flat ground - Deplacement de 500 m sur terrain plat Walking on uneven ground - Deplacement terrain inegal Standing still - Station debout immobile Climbing three steps (5-35 cm) - Passage de trois marches (5-35 cm) Walking up a slope (5-20%) - Utilisation d'un plan incline (5-20%) Using a moving walkway (1-3 km/h) - Montee et descente d'un tapis roulant (1-3 km/h) Standing up from sitting positions of different heights (20-60 cm) - Passage assis-debout pour differentes hauteurs d'assise (20-60 cm) Maximum strength in pushing and pulling on a vertical bar - Force maximale de poussee et de traction sur une barre verticale Maximum strength in using a handle and a tap - Force maximale lors de !'utilisation d'une poignee et d'un robinet 40 41 58 42 43 58/59 46.1 54 60 Disability code - Code incapacite Walking disability - lncapacite de marcher Traversing disability - lncapacite de franchir les obstacles Postural disability - lncapacite concernant la posture Climbing stairs disability - lncapacite de monter les escaliers Other climbing disability - Autre incapacite d'ascension Postural disability/Other body disposition disability - lncapacite concernant la posture/Autre incapacite concernant !'utilisation du corps Transfer from sitting - Changements a partir de la position assise Other disability in arm function - Autre incapacite concernant le fonctionnement du membre superieur Environmental modulation disability - lncapacite d'agir sur l'environnement que constitue !'habitation Time needed to carry out certain specific movements - Temps necessaire pour la realisation de gestes precis 60/61/62 Environmental modulation disability/other daily activity disability/fingering disability - lncapacite d'agir sur l'environnement que constitue l'habitation/Autre incapacite concernant les activites quotidiennes/ lncapacite concernant le doigte Distances and heights reached from standing or sitting positions - Distances et hauteurs d'atteinte en position debout ou assise 52/53/56 Retrieval disability/reaching disability/crouching disability - lncapacite de ramasser les objets/lncapa- cite d'atteindre des objets/lncapacite de s'accroupir Response to a written or verbal order - Reponse a un ordre ecrit ou oral 20 23 26 27 Dans un deuxieme temps, une comparaison a ete effectuee entre !'evaluation faite par les interesses de leurs deficiences et de leurs handicaps, au moyen d'un questionnaire simple, et leurs performances reelles observees. Entin la troisieme partie de l'etude a. ete consacree aux effets de l'age sur les capacites fonctionnelles des personnes et de la population. Un nouveau traitement des donnees a permis de comparer les effets de l'age sur la realisation de chaque test en fonction du type de tache proposee, et de sa difficul- te progressive. La recherche d'un indicateur synthe- tique de l'incapacite face a un environnement donne reproduit par les tests a ete longue en raison de la diversite des situations testees et des donnees col- lectees. L'esperance de vie sans incapacite (EVSI) calculee selon la methode de Sullivan (6) reprise par Rabine (7fJ est apparue comme l'indicateur le plus adapte, en raison de la fiabilite et de la precision des mesures effectuees et des prevalences observees dans la communaute de Saint-Cyr-sur-le-Rhone. 9 Vair aussi Estimation de la valeur de l'esperance de vie sans incapacite (EVS/J pour Jes pays occidentaux au cours de la derniere decennie, p. 141 du present numero. Impairment of clarity of consciousness and the quality of conscious experience - Deficience de la clarte de la conscience et de la qualite de !'experience consciente Impairment of perception - Deficience de la perception Impairment of emotion, affect and mood - Deficience de !'emotion, de !'affect et de l'humeur Impairment of volition - Deficience de la volition Principaux resultats Bi/an fonctionnel de la population Les resultats des tests effectues ant permis d'etablir le bilan fonctionnel de la population du village. Nombre de residents ant des difficultes reelles pour accomplir des taches relativement simples: 24% des personnes, tous ages confondus, ne peuvent pas, ou avec difficulte, descendre trois marches de 25 cm sans appui. Ce pourcentage s'eleve a 53% lorsque la marche est de 30 cm, et a 67% pour une marche de 35 cm (emmarche- ment de la majorite des autobus actuels) (Fig. 1). Plus de 45% des personnes sont genees pour descendre un plan incline de 20%. 50% des personnes mettent plus de 2,5 secondes pour deplacer un ticket d'une fente a une autre eloignee de 40 cm (activite de type compostage). Rapp. trimest. statist. sanit. mond., 42 (1989) - 169 - FIG.1 DESCENDING THREE STEPS WITHOUT SUPPORT" DESCENTE SANS APPUI DE TROIS MARCHES• 90 ....... ,,,,.,.,,, ... •• 80 70 •• •• •• • •• ••• • r~~~ Possible f .. :, "O • • • Limited - Limite •. 60 > ii ·= *- • • • __ Impossible t I 50 .. .;; :, "O ·,: ii 40 ·= *- 30 20 10 0 5 10 15 20 25 • • •• • 30 •• •• • ••• 35 Height of step (cm) - Hauteur marche (cm) ' N = 504 - La moitie de la population peut developper une force de poussee de plus de 15 kg sur une barre, mais 20% ne depassent pas 10 kg. - La comprehension d'un ordre simple, .oral ou ecrit (par exemple «appuyez sur ARRET») est impossible pour 5% de la population. - L'utilisation d'un tapis roulant, conc;.:ue pour facili- ter les deplacements, s'avere des 3 km/h difficile pour pres de la moitie de la population et dange- reuse pour 14%. - Les distances d'atteinte du membre superieur deviennent tres genantes pour le plus grand nombre au-dela de 40 cm d'eloignement de l'objet. De nombreux resultats ant ete tires des observations ainsi faites. lls ant ete adaptes a divers domaines de la vie courante, tels que les transports collectifs ou le logement, et peuvent faire l'objet d'autres utilisa- tions, par exemple: volumes accessibles aux enfants dans le domaine de la securite, conceptions architec- turales ou urbaines, pastes de travail, etc. Handicaps et situations Le handicap se revele au mieux en situation reelle. Ainsi le pourcentage de difficultes ou d'impossibili- tes a monter un escalier depend manifestement de la hauteur des marches. Ou encore: les difficultes de la population sur un sol mobile sont plus importan- tes a vitesse plus elevee (Tableau 2). Des donnees bien connues sur le plan international en matiere de contort ant ete confirmees: la hauteur de marche la Rapp. trimest. statist. sanit. mond., 42 (1989) plus satisfaisante se situe bien entre 15 cm et 20 cm. Mais surtout, on realise que de legeres modifications d'environnement peuvent faciliter les chases: la dis- position d'un appui permet a 50 personnes de plus, soit 10% de la population etudiee, de descendre les marches les plus elevees (Fig. 2). On voit ainsi se dessiner au fil des tests, non pas l'environnement ideal, mais le meilleur compromis possible pour la population etudiee. Estimation de l'etat de sante, de la deficience, et du handicap, et performances observees Avant le debut meme des tests, ii a ete demande a · chaque personne agee de plus de 10 ans: (i) si elle etait genee pour parler, entendre, marcher, s'as- seoir... en localisant sur un schema simplifie du corps !'emplacement des genes mentionnees (defi- ciences); (ii) si elle se sentait handicapee pour l'ac- complissement des activites de la vie courante (inca- pacite et handicap). La fonction de communication (vue, parole, ou'ie) est celle pour laquelle une gene est le plus souvent citee (25,2% des personnes declarent une ou plusieurs genes dans ce domaine). Viennent ensuite la loco- motion (19,6%), la prehension (14,5%) et enfin les fonctions viscerales (digestives, cardiaques, respira- toires, urinaires, vasculaires) (9, 1%); 42,9% des su- jets d'une population reputee «normale» declarent ainsi etre affectes de genes diverses, et 9,7% se declarent handicapes dans les gestes de la vie cou- rante. - 170 - TABLE 2. PERFORMANCE OF THE POPULATION OVER THE AGE OF 6 ON A MOVING WALKWAY AT 2 KMJH (V.21 AND 3 KM/H (V.31 TABLEAU 2. PERFORMANCE DE L'ENSEMBLE DE LA POPULATION AGEE DE PLUS DE 6 ANS SURTAPIS ROULANT A 2 KM/H (V.21 ET 3 KM/H (V.31 Step on to walkway V.3 Embarquement tapis V. 3 Step on to walkway V.2 Embarquement tapis V. 2 Age Possible % Limited - Limite Impossible Possible % Limited - Limite Impossible % % % % 6-14 15-17 18-24 25-34 35-49 50-64 65+ 36 62 70 50 36 33 12 58 38 30 42 60 49 38 6 71 90 89 8 81 5 73 18 57 50 31 29 10 11 19 26 39 52 1 4 17 FIG. 2 INABILITY TO DESCEND THREE STEPS• IMPOSSIBILITE A LA DESCENTE DE TROIS MARCHES• --- Impossible without support - Impossible sans appui 10 - Impossible with support· Impossible avec appui 8 " ::, ,, ·;; 'ii .!: 'If- I 6 " ii ::, ,, ·;; 'ii .!: 'If- 4 2 0-+----....----. ...... --...... --....... --...... -----4 5 10 15 20 25 30 35 Height of step (cm) - Hauteur marche (cm) • N = 504 Cette estimation subjective a ete comparee aux per- formances realisees. Les personnes s'estimant ge- nees ont, par rapport a celles qui ne le sont pas, des performances significativement degradees. Cette dif- ference est encore plus marquee entre ceux qui s'estiment handicapes et le reste de la population. Toutefois la degradation des performances ne se manifeste pas dans toutes les situations avec la meme intensite. Ainsi les tests de deplacements et de mobilite sont plus significatifs a cet egard que les tests de prehension. De meme, les tests reprodui- sant des situations a forte exigence (hautes marches, fortes pentes) sont lies a une meilleure appreciation de la part des personnes que les tests a faible exigence. Ainsi les donnees resultant de l'ecoute des personnes rejoignent celles de !'observation pour confirmer !'aspect situationnel, c'est-a-dire social et environnemental, du handicap tel qu'il est defini dans la CIH (4). Entin, la repartition dans la popula- tion, exprimee en pourcentage de chaque classe d'age, des personnes qui s'estiment genees et han- dicapees montre un lien tres fort avec l'age (Fig. 3); mais les pourcentages ramenes a la totalite de l'e- chantillon montrent que le plus grand nombre de personnes concernees est, dans la population consi- deree, d'age inferieur a 60 ans (Fig. 4). Rapp. trimest. statist. sanit. mond., 42 (19891 16 14 12 c: ~ 10 E .. .<: <.> ... *- 8 .. ci. E 6 .. "' *- 4 2 0 .. Cl ... 'o .. 0. ~ e Cl *- I 0. ~ 0 Cl .. Cl .. *- - 171 - FIG.3 DIFFICULTY AND HANDICAP BY AGE GROUP" EXPRESSION DE LA GENE ET DU HANDICAP PAR GROUPE D'AGE• 100 90 80 - Difficulty - Genes 70 - Handicap - Handicapes 60 50 40 30 20 10 0 11-20 21-30 31-40 41-50 51-60 61-70 SUP70 Age group - Groupe d'age • Age 10+; N = 428 FIG.4 DIFFICULTY AND HANDICAP ACCORDING TO AGE• EXPRESSION DE LA GENE ET DU HANDICAP EN FONCTION DE L' AGE• 13.9 ~ Difficulty - Genes II Handicap - Handicapes 11-20 21-30 31-40 41-50 51-60 61-70 Age group - Groupe d'age SUP70 ' Age 10+; N = 428 Rapp. trimest. statist. sanit. mond., 42 ( 1989) 172- L'effet de /'age L'age est en effet un facteur majeur de modification des capacites fonctionnelles. Toutefois, les resultats obtenus montrent que, si la degradation des perfor- mances avec l'age est incontestable, elle est en fait perceptible bien avant 60 ans, et elle se manifeste de fac;:on d'autant plus precoce et brutale que les exi- gences du milieu sont fortes (Fig. 5). II est egalement interessant de constater que certaines diminutions sur le plan fonctionnel se rencontrent autant chez les enfants de mains de 10 ans que chez les personnes de plus de 60 ans. De meme, 75% des personnes s'estimant genees et 70% des personnes s'estimant handicapees n'ont pas atteint 60 ans, ce qui souligne encore !'emergence progressive de l'incapacite au cours de toute la vie adulte. L'esperance de vie sans incapacite (EVSI) se revele un ban indicateur synthetique des capacites fonc- tionnelles en relation avec l'age. La precision de l'incapacite observee permet en effet de calculer des variations de l'EVSI selon la situation presentee par chaque test. Les situations de test les plus difficiles correspondent a des EVSI plus reduites, alors que les situations plus favorables correspondent a des EVSI plus proches de l'esperance de vie (Fig. 6 & 7). De meme, !'auto-estimation du handicap est bien correlee avec l'EVSI. Mais !'appreciation des genes par questionnaire et en relation avec les parties du corps n'est pas significativement liee a l'EVSI. La determination la plus precise possible du degre et du type d'incapacite utilise pour le calcul de l'EVSI en general est done d'une absolue necessite. L'ob- servation directe, comme le questionnaire, peut ser- vir de base a !'estimation de l'incapacite. L'utilisation de tests fonctionnels progressifs a le merite de ne pas confiner la mesure de l'EVSI a des niveaux trap severes d'incapacite. A !'inverse, l'EVSI peut permet- tre d'interpreter l'incapacite non seulement dans l'absolu, mais aussi par rapport a l'environnement de l'echantillon utilise. L 'importance de la parole En plus des questions posees sur les deficiences et handicaps, les commentaires recueillis a l'issue de chaque test ant ete analyses. II apparait d'abord que les commentaires vont en quantite croissante depuis ceux qui ne s'estiment pas genes jusqu'a ceux qui s'estiment handicapes. La parole pourrait etre un moyen important de pouvoir vivre publiquement avec un deficit fonctionnel. En revanche, le contenu des commentaires sur la penibilite, au les evocations suscitees par certains tests, ne permettent pas de retrouver de difference entre ceux qui s'estiment handicapes et les autres, ce qui confirme la simili- tude des personnalites au sein de ces groupes, deja etudiee par ailleurs (3). FIG. 5 DESCENDING THREE STEPS "POSSIBLE WITHOUT SUPPORTn ACCORDING TO AGE AND HEIGHT DESCENTE DE TROIS MARCHES «POSSIBLE SANS APPUI» EN FONCTION DE L'AGE ET DE LA HAUTEUR 100 ,.,.,,.,.,.,.,.,.,.,.,.,.,.,, 15cm 90 - 20cm 80 25cm 70 " , I I I 30 cm "' ..., 60 i:, " a. :, 0 - 35cm Cl * 50 a. :, e 40 Cl " Cl "' * 30 20 10 1-10 11-20 21·30 31-40 41-50 51-60 61·70 SUP 70 Age group - Groupe d'age Rapp. trimest. statist. sanit. mond., 42 (1989) w .... :s 60 40 20 - 173 - FIG.& DISABILITY-FREE LIFE EXPECTANCY (DFLE) IN WOMEN AGED 11-85• ESPERANCE DE VIE SANS INCAPACITE (EVSI), FEMMES DE 11-85 ANS• LEf-EVf - DFLE 151 - EVSI 151 DFLE 351 - EVSI 351 10 15 20 25 30 Age • Calculated from inability to ascend a step of 15 cm (DFLE15f) or a step of 35 cm (DFLE 351) compared with overall life expectancy (LEI) - Calculee a partir de l'impossibilite ii franchir une marche de 15 cm (EVSl15f) ou une marche de 35 cm (EVSl35f) et comparee a l'esperance de vie globale (EVf). ~ .... c 60 40 20 FIG:7 DISABILITY-FREE LIFE EXPECTANCY (DFLE) IN MEN AGED 11-85. ESPERANCE DE VIE SANS INCAPACITE (EVSI), HOMMES DE 11-85 ANS• ,, ,, ,, ,,,,, ,, ,, ,, ,, ,,, ,,,, ,, ,,, ,,,, LEm-EV h OFLE 15m - EVSI 15h u u • • • • • • • DFLE 35m - EVSI 35h ,,, ,,, ,,,, ,, ,,, ,,, ,,, ,,, ,,, ,,, ,,, ,,, ••••••• o ..... ~ .... ~ ........... ~ ..... ~--~-.~ ..... ~~..-~--~ .... ~ ........... ~ ..... ~ ..... ~ .............. 10 15 20 25 30 35 40 45 50 55 60 65 70 75 80 Age • Calculated from inability to ascend a step of 15 cm (DFLE15m) or a step of 35 cm (DFLE 35m) compared with overall life expectancy (LEm) - Calculee ii partir de l'impossibilite a franchir une marche de 15 cm (EVSl15h) ou une marche de 35 cm (EVSl35h) et comparee a l'esperance de vie globale (EVh). Rapp. trimest. statist. sanit. mond., 42 (1989) 174 - Discussion Cet article a tente de montrer (i) qu'une micro- enquete dans une population homogene est pos- sible, et qu'elle doit concerner non seulement les personnes agees, mais toutes les tranches d'age; (ii) qu'elle fournit les bases d'enquetes a plus grande echelle sur d'autres echantillons de population, plus representatifs et plus varies; (iii) que de telles enque- tes pourraient etre les appuis des politiques de sante locales dans les domaines de l'incapacite et du handicap. Au-dela de son interet strictement ergonomique, une telle etude permet, en se concentrant sur les limita- tions fonctionnelles, de proceder a des projections amenant a mieux comprendre l'incapacite et le han- dicap resultant (8). Dans cet esprit, les roles de l'en- vironnement et des situations confrontees apparais- sent de grande importance. lls constituent le com- plement de !'evaluation centree sur le processus individuel de production de l'incapacite et du handi- cap tel que le decrit la CIH (4). L'appreciation des personnes sur leurs possibilites fonctionnelles apparait fiable a condition que les questionnaires au entretiens aient pour objet l'inca- pacite et le handicap. Les deficiences elles-memes, largement repandues dans toutes les tranches d'age, ne permettent pas une appreciation exacte de l'inca- pacite et du handicap. Elles ne permettent pas non plus un calcul de l'esperance de vie sans incapacite, car elles sont probablement trap proches des condi- tions medicales sous-jacentes. Les questionnaires et entretiens devraient tenir compte des exigences propres a chaque situation testee. II conviendrait en effet, par exemple, d'enque- ter aussi bien sur les difficultes a gravir une marche elevee (35 cm, au marche d'autobus) que les mar- ches de hauteur normale (15 cm, hauteur architectu- rale habituelle). Ceci est d'une particuliere impor- tance dans toutes les enquetes concernant la mobili- te, d'autant plus que la mobilite est probablement un excellent temoin de l'incapacite et surtout du handicap. Une concentration excessive sur les situa- tions a fortes exigences risque d'isoler seulement, au sein de la population et singulierement des per- sonnes agees, des sujets a incapacites et handicaps eleves. A !'inverse, pour les personnes agees ou handicapees, l'accent mis sur les situations difficiles risque d'occulter les problemes rencontres face a des situations plus courantes, mais generatrices par exemple de chutes au de blessures. Les etudes de type ergonomique ant l'avantage de la precision de la mesure, elements importants dans !'evaluation de l'incapacite. Les resultats obtenus au cours de la micro-enquete effectuee a Saint-Cyr-sur- le-Rh6ne ant le meme degre eleve de precision que ceux de l'enquete de G6teborg (9), enquete d'une duree de 10 ans au cours de laquelle trois cohortes distinctes de septuagenaires ant ete comparees. II a ete possible d'appliquer ces resultats au domaine des transports en commun (10), en comparant les tests qui reproduisaient des situations proches de celles des transports aux caracteristiques des situa- tions reelles de transport. Les taux de prevalence sont superieurs a ceux qui sont generalement avan- ces par les etudes classiques en matiere de trans- port, car !'observation directe evite certains biais des questionnaires, meme s'ils sont administres a !'occa- sion d'une entrevue. Des recommandations precises ant pu etre ainsi faites aux concepteurs et exploi- tants des reseaux de transport collectif pour une meilleure integration des personnes en difficulte. Mais une enquete de ce type fournit d'autres bases pour l'action. Son concept meme, qui unit les carac- teristiques individuelles a des caracteristiques d'en- vironnement, montre bien que l'action en matiere d'incapacite et de handicap est de type medical et social. Des etudes globales ou ponctuelles associant observation et questionnaire peuvent etre menees par maladies ou groupes de maladies, et donner lieu, le cas echeant, a la creation de registres specifi- ques. Encore plus souhaitable est la realisation d'en- quetes de plus grande taille reunissant par exemple de fa~on sequentielle: questionnaire postal, entrevue et observation directe. Remerciements Cette etude a ete realisee avec l'aide de l'INSERM (contrats N° 838012, 838023, et 868028), de l'Obser- vatoire regional de la sante Rh6ne-Alpes (contrat N° 21/83), de la MIRE (Ministere des affaires sociales et de l'emploi, 1986), de l'INRETS, et du Ministere des transports (Direction des transports terrestres). Nous remercions particulierement la municipalite et la population de Saint-Cyr-sur-le-Rh6ne dont la con- fiance, l'interet et la disponibilite ant permis la reus- site de cette etude. RESUME Le handicap est la resultante d'un processus qui, a partir d'une maladie sous-jacente, au d'un accident, au d'une anomalie, conduit a un deficit fonctionnel confronte aux diverses situations de la vie courante. Cette definition, qui derive de la Classification inter- nationale des handicaps: deficiences, incapacites et desavantages (CIH) repond au desir d'integration sociale des personnes agees et handicapees elles- memes. Elle peut constituer aussi la base concep- tuelle d'analyse des capacites des personnes et des populations. Dans ce but, une micro-enquete a ete conduite dans une communaute villageoise homogene de 532 per- sonnes agees de 1 a 92 ans. II s'agissait d'une etude de type ergonomlque, associee a un questionnaire sur les genes et handicaps ressentis, effectuee trans- versalement sur une duree d'un mois (94,7% de participation). Les objectifs precis de l'etude etaient d'obtenir une image fonctionnelle fiable de la popu- lation du village, de comparer !'auto-evaluation de la capacite fonctionnelle aux performances observees, et d'analyser les effets de l'age sur les capacites. De nombreux resultats collectes dans les domaines de la deambulation, de la prehension, et de la .communication ant permis d'etablir un bilan fonc- tionnel precis de la population etudiee. Ces donnees Rapp. trimest. statist. sanit. mond., 42 (1989) - 175 - peuvent etre transposees a des milieux particuliers: transports, logement, ecole, travail, et servir de base de comparaison. Les difficultes rencontrees par les personnes lors des tests sont etroitement liees aux types de situations reproduites par les tests. L'estimation subjective du handicap, comparee aux performances realisees, se revele fiable, tout particulierement en ce qui con- cerne les tests de mobilite, et les situations a forte exigence. La presence estimee d'un handicap augmente avec l'age. La degradation des perfor- mances observees est proportionnelle a l'age, mais elle est perceptible precocement, des 30 ou 40 ans. L'esperance de vie sans incapacite (EVSI) pourrait constituer un indicateur interessant dans la mesure ou ii apparait sensible a la confrontation des capaci- tes fonctionnelles individuelles avec l'environne- ment. II importe toutefois que l'incapacite utilisee comme base de calcul soit mesuree avec le maxi- mum de precision. Une telle enquete dans une communaute apparait done particulierement utile sur le plan ergonomique d'abord, mais aussi pour la planification locale des aides diverses medicales et sociales, dans le domai- ne de l'incapacite et du handicap. La combinaison de !'observation et de l'ecoute des personnes avec en- trevue apparait fructueuse et fiable. Des etudes ponctuelles, sur des echantillons de population bien cibles, ou au contraire sur des populations plus larges et plus significatives, seraient souhaitables en sante publique, dans la mesure ou l'approche epide- miologique du handicap a, jusqu'ici, ete essentielle- ment centree sur le diagnostic et !'evaluation medicale. SUMMARY Measuring handicap in the community: a micro-survey in a French village Handicap is the result of a process initiated by an underlying disease, an accident or an abnormality, which leads to a functional deficit in various situ- ations of everyday life. This definition, derived from the International Classification of Impairments, Dis- abilities, and Handicaps (ICIDH), reflects the desire of the elderly and the handicapped for social integra- tion. It may also form the conceptual basis for analysis of the capacities of individuals and popula- tions. To this end, a micro-survey was conducted in a homogeneous village community of 532 people aged 1-92 years. This study was of the ergonomic type, accompanied by a questionnaire on perceived re- strictions and handicaps, and carried out trans- versely over a period of one month (94.7% participa- tion). The specific objectives of the study were to obtain a reliable functional representation of the population of the village, comparing self-assessment of functional capacity with observed performance, and analysing the effects of age on capacity. The copious data collected in the areas of locomo- tion, prehension and communication have provided a detailed functional profile of the population studied. These data may be transposed to particular environments, such as transport, housing, school or work, and may serve as a basis for comparisons. The difficulties encountered by subjects in the tests were closely correlated with the situations simulated by the tests. Subjective estimation of handicap proved to be reliable in comparison with actual performance, especially for tests of mobility and highly demanding situations. Estimation of the pres- ence of a handicap increased with age. The deterio- ration in performance observed was proportional to age, but can be perceived to begin early, at about 30-40 years. Disability-free life expectancy (DFLE) could be an interesting indicator in so far as it appears to be sensitive to the confrontation of indi- vidual functional capacities with the environment. However, it is important that any disability used as a basis for calculation should be measured with max- imum precision. A community survey of this kind is thus particularly useful for ergonomic purposes, but is also valuable for the planning of medical and social assistance at the local level in the areas of disability and hand- icap. The combination of observation and listening to people, with an interview, appears to be fruitful and reliable. Single studies of well-targeted samples of the population, or, alternatively, of larger and more significant populations, would be desirable in public health, since the epidemiological approach to handicap has hitherto been essentially focused on diagnosis and medical evaluation. REFERENCES- REFERENCES 1. MINAIRE, P. Le handicap en porte a faux. Pros- pective et sante, 26: 39-46 (1983). 2. M1NAIRE, P. ET AL. L'etude de la fonction d'une population: une nouvelle approche du handicap (Saint-Cyr-sur-le-Rhone, septembre 1984). Echanges-sante, Ministere des affaires sociales et de l'emploi, 48-49: 40-45 (1987). 3. WEBER, D. ET AL Psychological and dynamic aspects of handicaps. International journal of rehabilitation research, 4(3): 303-313 ( 1981). Rapp. trimest. statist. sanit. mond., 42 ( 1989) 4. WORLD HEALTH ORGANIZATION. International Classi- fication of Impairments, Disabilities, and Hand- icaps-a manual of classification relating to the consequences of disease. Geneva, WHO, 1980. ORGANISATION MONDIALE DE LA SANTE. Classification internationale des handicaps: deficiences, inca- pacites et desavantages - un manuel de classifi- cation des consequences des maladies. Paris, CTNERHI-INSERM, 1988. - 176 - 5. McDOWELL, I. & NEWELL, c. Measuring health: a guide to rating scales and questionnaires. New York/Oxford, Oxford University Press, 1987. 6. SULLIVAN, D. F. A single index of mortality and morbidity. HSMHA health reports, 86: 347-354 (1971). 7. ROBINE, J.M. ET AL Les indicateurs d'esperance de vie sans incapacite (EVSI) - des indicateurs globaux de l'etat de sante des populations. Revue d'epidemiologie et sante publique, 35(2): 206-224 (1987). 8. BADLEY, E. M. & LEE, J. Impairment, disability and the ICIDH model-Part I. The relationship be- tween impairment and disability. International journal of rehabilitation medicine, 8(2): 113-117 (1986). 9. LUNDGREN-LINQUIST, B. ET AL. Functional studies in 79-year-olds-l. Performance in hygiene ac- tivities; II. Upper extremity function; Ill. Walking performance and climbing capacity. Scan- dinavian journal of rehabilitation medicine, 15(2): 109-115; 117-123; 125-131 (1983). 10. INRETS. Capacites fonctionnelles matrices d'une population: repercussions sur l'accessibilite des transports collectifs. Arcueil, lnstitut national de recherche sur les transports et leur securite, 1988. (Rapport N° 81). Rapp. trimest. statist. sanit. mond., 42 (1989) - 177 - PLANNING SERVICES TOGETHER WITH DISABLED PEOPLE: THE IMPORTANCE OF A COMMON LANGUAGE a Victor Finkelsteinb The 1981 International Year of Disabled Persons reflected and encouraged changes that were already happening all over the world, and that have created the need for new definitions of disability. It is these changes that make it necessary for us to improve our understanding of disability. Before looking at different definitions and concepts, it is worth deter- mining the starting points for discussion on the need for changes in the way we think about disability, namely: • the important consequences arising out of the greater participation of disabled people in their own communities; and • the growing criticism of existing disability-related services. Greater participation of disabled people Disabled people have become more integrated into their communities. Three areas where this change is most notable can be listed as public influence, visibi- lity, and access. There are now more disabled people occupying influential positions in ordinary life. For example, the vice-chairperson of Disabled Peoples International has become a city councillor in Zimbabwe. In France, one of the government min- isters is a disabled person. An increasing number of books written by disabled people are being used as textbooks in training and are having an increasing influence on services. Until recently, policy in industrialized countries had gradually led to the provision of a wide range of special facilities which effectively removed disabled people from their communities, and it had become rare to see disabled people in public. However, in recent years, this trend has been somewhat reversed (most markedly, for instance, in Nordic countries). Ramps, beeping pedestrian crossings, etc., have made "disabled living" more familiar and less threatening to non-disabled people. Very often the wider spaces needed for wheelchair access and the improved communication systems needed for blind and deaf persons have also made life more comfort- able for the non-disabled. Deeper and sharper criticism of services for disabled people An increasing number of reports criticize the inad- equacy of services for disabled people. In this light, one should question the adequacy of rehabilitation concepts as a framework for service delivery and the 8 This article is based on a paper presented at a meeting on the United Nations Disability Data Base, held in Budapest (Hungary), on 17 november 1988. b Lecturer, the Open University, United Kingdom; formerly Chairman, Disabled Peoples International Research Committee; and formerly Member, Disabled Peoples International World Council. Wld hlth statist. quart., 42 (19891 competency of rehabilitation as a coherent mode of helping disabled people. There is growing literature questioning not only the adequacy of service de- livery to disabled people but also the appropriate- ness of some of the basic premises behind these services. The most widely expressed criticism ques- tions the relevance and appropriateness of the med- ical approaches to the social problems that disabled people face. Research is also beginning to reveal a gap in perception of the value of services between service providers and service users. Some professions that have evolved to fill service roles related to disability may suffer from a pro- fessional rigidity which can quickly put them out of step with changing conditions. For example, occu- pational therapy took on the role of assessing dis- abled people for the provision of equipment and recommending house adaptations after it had ma- tured into a profession, based upon medical ideas about therapy in the hospital or rehabilitation set- ting. One could however argue that it may be prefer- able for the provision of equipment to disabled people to be based on the principles of engineering and design rather than on medical or paramedical theories. As long as services are planned and developed on the basis of concepts and definitions which are not fully appropriate, these problems will remain. It is important, therefore, to go back and take a clearer and deeper look at basic definitions of disability and the appropriate forms of help. Basic assumptions: the "cure or care" forms of help There are two assumptions in disability about which all can agree: 1. Disabled people have real personal and social problems which are neither the result of their denying their disability (as many professional workers are taught), nor simply a question of changing the attitudes of non-disabled people (as many disabled people believe). 2. Disabled people need practical assistance in over- coming these problems. The interpretation and the consequent definition of the real problems disabled people face critically influence the decisions concerning the kind of help required. Criticisms of existing services suggest that problems faced by disabled people have been wrongly defined, and therefore the type of help provided has not been appropriate. Helping other people is not simple, and involves interactions which affect all those involved. Paralysed people taught to try and walk with calipers and crutches as a way of getting to an otherwise inaccessible toilet will de- velop long-term attitudes towards themselves that - 178 - will psychologically affect them. Both the type of help and how this is provided will affect the relation- ship between helper and helped. The way help is planned is very important and it is essential to understand this helping relationship better. Let us look at the practice of "help" that has become normal in existing services for disabled people. Med- ical rehabilitation is perhaps a good place to start because it is in this approach that a particular form of help became systematized before being adopted in nearly all other services. Cure In the first instance, the label "disability" comes to mind when an individual with a physical or mental impairment who is not functioning "normally" comes to the attention of a helper (usually a health worker), who becomes conscious of disability as a facet, or personal attribute, of the disabled indi- vidual. The objective of the helper is thus to cure the individual's problem and return him or her to nor- mality. The aim of returning the individual to nor- mality and eliminating the personal disability prob- lem is the foundation upon which the whole re- habilitation machine is constructed. However, if the disability cannot be cured, normative assumptions are not abandoned: the aim of treatment now be- comes "to be as normal as possible". The result can be endless soul-destroying hours of exercise trying to approximate able-bodied standards (e.g. people with a complete spinal injury learning to "walk"). In rehabilitation even "sport" ceases to be a pleasure and is imposed as a therapy, although most disabled people, like most people generally, are not as a rule mad about sport. Rehabilitation philosophy em- phasizes physical normality and the attainment of skills that allow the individual to align behaviour as closely as possible to that of the able-bodied. For example, a wheelchair is seen as a last resort, rather than as a mobility aid for disabled people (just as a pair of shoes is a mobility aid for able-bodied people). Care Emphasis on being and behaving as normally as possible can condition helpers and planners to think very narrowly about the kind of lives disabled people can lead. Given that disabled people cannot be "cured", the "degree of normality" achieved can assume great significance in the minds of those who plan helping services. The logic of rehabilitation is that the closer people get to functioning in a normal way, the more they are thought capable of living in normal society; conversely, the further they are from normal functioning, the greater the degree of care considered necessary. From the point of view of rehabilitation, therefore, planning requires informa- tion about the degree of normality, or, in question- naires designed for planning, measures of the loss of normal function. This emphasis on normality gets reinforced at the practical level; for example, public transport (an able-bodied mobility aid) cannot be used by people with mobility impairments, who are thus in effect prevented from doing their own shop- ping. Under those circumstances, they have no alternative but to rely on others to care for them. This can reinforce the view that, if there is no complete cure, the degree of normality achieved during rehabilitation determines the degree of care that will eventually be needed in the community. Rehabilitation workers thus have an incentive to follow disabled people out of the hospital, and half- way schemes, into the community (community- based rehabilitation); in this context, the choice for disabled people, in practice, is either to succeed in being normal or else suffer indefinite intervention in their lives in the community. At the psychological level, it seems natural, if the key objective of rehabilitation is normality, to en- courage disabled people, as far as possible, to assimilate the standards of normal role models. However, disabled people are not "normal". They do not look or behave "normally"; there is a limited possibility of a "normal" social life for them in a world designed for people with able bodies. Even when the objective is to be "as normal as possible" the inaccessibility of a world designed for people with able bodies constantly reinforces the lesson that disabled people have failed the ultimate goal of rehabilitation, and entails pressure on them to ac- cept their limitations in the able-bodied world by adjusting. to disability. In this context, the choice for disabled people is again either to succeed in assimil- ating the values of normal society, or suffer feelings of inadequacy indefinitely. Rehabilitation values are a powerful force in the· planning side of disability services. The central con- cepts and philosophy of rehabilitation, which per- meate medical rehabilitation and its offshoots, e.g. community-based rehabilitation, present no obvious alternatives to "cure or care". This philosophy tends to dominate all services for disabled people. In Britain, for example, the Chronically Sick and Dis- abled Persons Act (1970) applied the medical re- habilitation concepts of disability to life in the com- munity. Its starting point was that when a complete cure was not possible, what was needed for the individual to survive in the community was personal care. The "cure or care" approach to helping disabled people has a long history and represents the traditional way of viewing assistance to disabled people. This ap- proach presents the following characteristics: • it is personal-disabled people need personal help in overcoming the problems which they face (hence, impairment, disability and handicap are defined in personal terms); • it lays stress on abnormality-problems result from an individual's abnormality of body or mind (hence, an emphasis on assessing individual functioning for access to the services); • it lays stress on inability-the abnormality of body or mind is interpreted as preventing indi- viduals from doing something that is normal for their peers (hence, an emphasis on caring ser- vices); • it tends to be piecemeal-planning of personal care services tends to follow a series of crises over time, using ad hoe definitions which often do not get to the heart of the matter. Each new approach attempts to patch up gaps (hence a lack of understanding of the nature of disability, and the development of strategic ways of solving outstanding problems). Moving on from "cure or care" One problem lies in that people think that the "cure or care" approach can be successfully applied in Wld hlth statist quart., 42 (1989) - 179 - areas where it is not appropriate. The benefits of good medical practice are undeniable. When I be- came disabled, tetraplegics were not living more than a few years. More than 30 years later, as a direct result of help, I am still around, criticizing the medical profession. However, the intrinsic negative implications in the rehabilitation approach to help have not been properly analysed and understood. The development of new techniques and industrial materials in the late 1960s opened up innovative prospects for disabled people in their communities. This, in turn, brought problems inherent in the re- habilitation concept of disability into the open. The positive side of the "cure or care" approach to help is increasingly overshadowed by its negative effects. In industrialized countries, the (re)appearance of dis- abled people in the community may be a turning point in breaking down the "cure or care" approach to rehabilitation. When disabled people try to get about in the able-bodied world, they are bound to see and define the problems that they face more in terms of social and physical environment than in terms of abnormalities of their own minds and bodies. With this approach, disabled people will be doing just what their able-bodied peers do in a similar situation-seeking ways of modifying en- vironment and behaviours, so that barriers to inde- pendence are removed. Able-bodied people, faced with the problem of swifter transport, did not think that the problem lay in their defectiveness of body; they invented the fast train and the airplane. Such "able-bodied aids" adapt the physical and social environment to able-bodied imagination; they pro- vide proof that there is no set limit to human independence, and that the choice does not have to be between finding an effective cure or providing appropriate care. The key principle in redefining the impact of dis- ability (and the ways of living with it) is to redefine disability as a dynamic relationship between: - people who have specific physical and mental impairments; and - the social and physical barriers imposed by a world designed for able-bodied living. One suitable definition might read: - impairment: lacking part of or all of a limb, or having a defective limb, organ or mechanisms of the body; - disability: disadvantage or restriction of activity caused by a social organization which takes no or little account of people who have physical impair- ments and thus excludes them from the main- stream of social activities. This concept represents a fundamental shift in think- ing, from the individualistic, "cure or care" ap- proach, to a social interpretation of disability, the elements for a new understanding of which are already present in society. Arguments in favour of such an understanding (such as those developed by the Union of the Physically Impaired Against Segre- gation in their 1976 statement on Fundamental Princ- iples of Disability) will increase in importance as we move into comprehensive planning towards the dev- elopment and practical application of a community- based support system for disabled people. SUMMARY The very terms used to describe the consequences of disease have normative implications which have important repercussions on the elaboration of pol- icies with respect to the identification and treatment of these consequences. The author highlights the problems and effects caused by an individualistic procedure based mainly on the "cure or care" ap- proach, and suggests a terminological and con- ceptual framework which might take better account of the social aspects of disability. RESUME La planification des services en collaboration avec les personnes atteintes d'incapacites: l'importance d'un langage commun Le vocabulaire meme utilise pour la description des consequences de la maladie est base sur des impli- cations normatives qui ant des consequences impor- tantes pour le developpement de politiques relatives a !'identification et a l'approche de ces consequen- ces. L'auteur releve les difficultes et les consequen- Wld hlth statist. quan., 42 (1989) ces qu'entrainent les approches individualistes es- sentiellement basees sur la dualite «guerir au soi- gner», et presente une argumentation pour une orientation terminologique et conceptuelle qui fasse aux interpretations sociales de l'incapacite une part plus appropriee. - 180 - Corrigendum Rectificatif Vol. 42, No. 1, 1989 Vol. 42, N° 1, 1989 Page 8, Table 2 Replace footnote b by the following: Page 8, Tableau 2 Remplacer la note b par ce qui suit: b RYPLL: ratio of observed over expected years of potential life lost - Rapport entre les annees de vie potentielle perdues observees et prevues. Page 9, Table 3 Replace by the following: Page 9, Tableau 3 Remplacer par ce qui suit: TABLE 3. RATIOS OF YEARS OF POTENTIAL LIFE LOST (RYPLL) FOR SENTINEL CATEGORIES RELATED TO DIFFERENT PROBLEMS. ARGENTINA AND MEXICO, 19828 TABLEAU 3. RAPPORTS DES ANNEES DE VIE POTENTIELLE PERDUES (RYPLLJ POUR DES CATEGORIES SENTINELLES RELATIVES A CERTAINS PROBLEMES, ARGENTINE ET MEXIQUE, 19828 Sentinel categories for problems related to Categories sentinelles relatives a Vaccination programmesc - Programmes de vaccination° Sanitation and nutriti~~d· ~ i·iy·g·ii~~ ...... etnutritiond ...................... Abdominal surgerye - Chirurgie de l'abdomen8 •••••••••••••••••••••.• Vaccination programmes0 - Programmes de vaccination° Sanitation and nutriti~~d· ~ i·iy·g·ii~~ ~t .... nutritiond ........................ Abdominal surgery• - Chirurgie de l'abdomene ...................... Male - Sexe masculin Deaths < 65 YPLL rates" Deces < 65 Taux d'YPLL O Observed Expected Observed Expected Observes Prevus Observes Prevus Female - Sexe feminin RYPLL Observed/ Deaths < 65 YPLL rates" Expected Deces < 65 Taux d'YPLL O Observes/ Observed Expected Observed Expected Prevus Observes Prevus Observes Prevus Argentina - Argentine 99 37.3 116 39.9 0.5 914 23 417.9 9.2 45.4 809 18 375.1 6.6 261 82 53.4 17.7 3.0 211 65 38.7 11.7 Mexico - Mexique 913 140.8 0.2 780.4 1 053 2 155.9 0.4 16 463 65 2 702.0 11.0 246.4 14 227 52 2 355.0 8.7 757 172 79.2 19.7 4.0 675 123 66.5 12.3 RYPLL Observed/ Expected Observes/ Prevus 83.0 56.7 3.3 424.4 269.9 5.4 a Discrepancies with figures in previous tables are due to rounding - Les chiffres peuvent presenter des ecarts par rapport a ceux des tableaux precedents du fait qu'ils ont ete arrondis. b Rates per 100 OOO population uder age 65 - Taux pour 100 OOO habitants de moins de 65 ans. • Diphtheria (032). whooping cough (033), tetanus (037), acute poliomyelitis (045) and measles (055) - Diphterie (032), coqueluche (033), tetanos (037), poliomyelite aigue (045) et rougeole (055). • Intestinal infectious diseases (001-009) - Maladies infectieuses intestinales (001-009). • Appendicitis (540-543), hernia of abdominal cavity (550-553) and intestinal obstruction without mention of hernia (560) - Appendicite (540-543), hernie abdominale (550-553) et occlusion intestinale sans mention de hernie (560). Source: PAHO technical data base - Base de donnees techniques OPS. Pages 12, 13 et 14, Annexe Tableau iv Pages 12, 13 and 14, Annex Table iv Replace column headings by the following: Remplacer les entetes de colonnes par ce qui suit: Male - Sexe masculin All ages - T ous ages o/o all causes Number % de toutes Number Causes of death - Causes de deces Nombre les causes Nombre < 65 % all ages % de tous les ages Female - Sexe feminin All ages - Tous ages % all causes Number % de toutes Number Nombre les causes Nombre <65 % all ages %de tous les ages PUBLICATIONS OF THE WORLD HEALTH ORGANIZATION 1989 WORLD HEALTH FORUM An international journal of health development (Separate editions in English, French, Spanish, Arabic, Chinese and Russian) World health forum is a quanerly journal for policy-makers, health planners, adminis- trators, health educators, and public health workers of all kinds. It provides a medium for the presentation and discussion of new concepts in public health and new approaches to health problems, and it is devoted to the improvement of health through the promotion of health services covering the entire population and the undenaking of a wide variety of public health measures, whether or not they are supponed by WHO. The Forum is the main organ of WHO's Member States for the international exchange of health information and an active instrument in technical cooperation among developing countries. Subscription (4 numbers) Price per copy . . . . . . . BULLETIN Sw. fr. 55.- Sw. fr. 16.- OF THE WORLD HEAL TH ORGANIZATION The Bulletin is the principal scientific organ of WHO; its role is to review progress in medical and related sciences ("update" anicles) and to bring to light new knowledge by publishing original papers on scientific research in the laboratory and field. The Bulletin contains original anicles in either English or French, with a summary in the other language. One volume is published annually, consisting of six numbers. Subscription (6 numbers) Price per copy . . . . WEEKLY EPIDEMIOLOGICAL RECORD (Bilingual: English and French) Sw. fr. 130. - Sw. fr. 22.- Prepared for the guidance of health administrations and health authorities, the Weekly epidemiological record contains notifications made under the International Health Regula- tions and information concerning their application. The Record also contains epi- demiological information on communicable diseases of international importance. Annual subscription . Sw. fr. 150.- WORLD HEALTH STATISTICS QUARTERLY The World health stat1st1<, ,1u,irter/yreplaces(since 1978) the World health statistics report (published since 1967) and "' l<>rcrunner the Epidemiological and vital statistics report (published since 194 7). It dcab "t1h the detailed analysis of selected health topics of current interest. The Quarterfvcontains articles in either French or English with a summary in both languages. Annual subscription Price per copy . WORLD HEALTH STATISTICS ANNUAL (Bilingual: English and French) Sw. fr. 85.- Sw. fr. 23.- The forerunner of this series was the Annual epidemiological report of the League of Na/ions. It was followed by the Annual epidemiological and vttal statistics issued by the World Health Organization. Latest publications: 1984. Vital statistics and life tables, morbidity, causes of death (single volume), 402 pages . . . . . . . . . . . . . Sw. fr. 40. - 1985. Vital statistics and life tables, environmental health, causes of death (single volume), 531 pages Sw. fr. 80. - 1986. Vital statistics and life tables, evaluation of the Global Strategy for Health for All, causes of death (single volume), 692 pages . . . . . . . . . Sw. fr. 90. - 1987, Vital statistics and life tables, oral health and care, causes of death (single volume), 455 pages . . . . . . . . . . . . . . . . . . . . . . Sw. fr. 90.- 1988. Vital statistics and life tables, the health professions in the 1980s, causes of death (single volume), 513 pages . . . . . . . . . . Sw. fr. 90.- PUBLICATIONS DE L'ORGANISATION MONDIALE DELASANTE 1989 FORUM MONDIAL DE LA SANTE Revue internationale de developpement sanitaire (Editions separees en fran~ais, anglais, espagnol, arabe, chinois et russe) Forum mondial de la sante est une revue trimestrielle destinee aux responsables des politiques sanitaires, aux planificateurs, administrateurs et educateurs sanitaires, enfin aux travailleurs de la sante publique de toutes categories. Tribune pour la presentation et la discussion de nouveaux concepts en sante publique et de nouvelles approches des problCmes de sante. Forum se consacre a l'amClioration de la sante par la promotion de services de sante couvrant la population tout entiCre et d'une vaste gamme de mesures de sante publique, qu'elles soient ou non soutenues par l'OMS. II est le principal organe it la disposition des Etats Membres de l'OMS pour l'echange international d'informations sanitaires en meme temps qu'un instrument de cooJ)Cration technique entre pays en developpement. Abonnement (4 numeros) Le numero .... BULLETIN Fr. s. 55.- Fr. s. 16.- DE L'ORGANISA TION MONDIALE DE LA SANTE Le Bulletin est le principal organe scientifique de l'OMS; ii a pour role de passer en revue les progres des sciences medicales et apparentees (anicles de la rubrique « Le point») et de mettre en lumiCre les connaissances nouvelles en ptcsentant dans des anicles originaux les resultats de recherches scientifiques au laboratoire et sur le terrain. Le Bulletin contient des anicles originaux en fran.ais ou en anglais, accompagnes d'un resume dans l'autre langue. Un volume est publiC annuellement, Ctant forme de six numCros. Abonnement (6 numeros) Le numero ... RELEVE EPIDEMIOLOGIQUE HEBDOMADAIRE (Bilingue: fran.ais et anglais) Fr. s. 130.- Fr. s. 22.- Destine aux administrations sanitaires et aux services de santC, le Re/eve epidJmio/ogique hebdomadairecontient les notificationsexigees par le Reglement sanitaire international, ainsi que d'autres renseignements concernant !'application de ce reglement. Le Re/eve contient egalement des informations epidemiologiques concernant les maladies transmissibles d'une importance intemationale. Prix de l'abonnement annuel ............... . Fr. s. 150.- RAPPORT TRIMESTRIEL DE ST A TISTIQUES SANIT AIRES MONDIALES Le Rapport trimestrie/ de statistiques sanitaires mondia/es. remplace (dcpuis 1978) le Rapport de statistiques sanitaires mondia/es(publie depuis 196 7) et son precurseur le Rapport epidemio/ogiqueet demographique(publie depuis 1947). II presente des analyses detaillees sur des sujets sl)ecifiques d'interet courant. Le Trimestr,e/ presente des anicles originaux en francais ou en anglais, accompagnCs d'un resume dans les deux langues. Prix de l'abonnement annuel Le numCro ........ . ANNUAIRE Fr. s. 85.- Fr. s. 23.- DE ST ATISTIQUES SANIT AIRES MONDIALES (Bilingue: fran~ais et anglais) Cet annuaire remplace les Statistiques ,!pidemiologiques et demographiques annuel/es publiCes par !'Organisation mondiale de la SantC et qui avaient. elles-memes, remplacC le Rapport epidemiologique annuel public par la Societe des Nations. Publications rCcentes: 1984, Mouvements de la population et tables de survie, morbidite, causes de deces ( I seul volume), 402 pages . . . . . . . . . . . . Fr. s. 40. - 1985, Mouvement de la population et tables de survie, salubritC de l'environnement, causes de deces ( I seul volume), 531 pages . . Fr. s. 80. - 1986, Mouvement de la population et tables de survie, evaluation de la Strategie mondiale de la sante pour tous, causes de deces ( I seul volume), 692 pages . . Fr. s. 90. - 1987, Mouvement de la population et tables de survie, sante et soins bucco-dentaires, causes de deci:s (I seul volume), 455 pages . Fr. s. 90.- 1988, Mouvement de la population et tables de survie, la situation des professions de sante dans les annees 80, causes de deces ( I seul volume), 513 pages Fr. s. 90. -