WHO/MSD/MER/Rev. 2012.01 English only
WHOQOL-HIV Instrument THE 120 QUESTIONS WITH RESPONSE SCALES & 38 IMPORTANCE ITEMS
MENTAL HEALTH: EVIDENCE AND RESEARCH DEPARTMENT OF MENTAL HEALTH AND SUBSTANCE DEPENDENCE WORLD HEALTH ORGANIZATION GENEVA
Copyright © World Health Organization [2002]
This document is not a formal publication of the World Health Organization (WHO), and all rights are reserved by the Organization. The document may, however, be freely reviewed, abstracted, reproduced, in part or in whole, but not for sale or for use in conjunction with commercial purposes.
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WHOQOL-HIV INSTRUMENT The WHOQOL-HIV has been developed from an extensive test of 115 questions, plus the WHOQOL-100 in 10 centres around the world. Th ese questions rep resent the finalised version of the WHOQOL-HIV to be used for field trials. The WHOQOL-HIV is based on the WHOQOL-100. It is a generic English version and should never be used as it stands, nor just be translated. Versions suitable for use in an HIV population ar e available from the listed field trial c entres. These versions are constructed by taking the corresponding 120 questions and response scales exactly as they stood in the language version that was used in the pilot test. (It should be noted that some variations exist even between the versions from the three English language centres). These questions respond to the definition of Quality of Life as individuals' perceptions of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. Centres wishing to develop a new language or cultural version, must follow the protocol for new centres under the supervision of the Department of Mental Health & Substance Dependence, WHO, Geneva, and as mentioned above must never just make a direct translation or an unsupervised adaptation of the WHOQOL-HIV Instrument. For further information contact: mhgap-info@who.int
MENTAL HEALTH: EVIDENCE AND RESEARCH DEPARTMENT OF MENTAL HEALTH AND SUBSTANCE DEPENDENCE WORLD HEALTH ORGANIZATION GENEVA
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WORLD HEALTH ORGANIZATION HIV/AIDS QUALITY OF LIFE GROUP The WHOQOL HIV Group comprises a coordinating group of collaborating investigators in each of the field sites and a panel of consultants. Dr Shekhar Saxena directed the project that was initiated by Dr Rex Billington and Dr John Orley. Technical assistance on the project was given by Ms. M. Lotfy and Ms K. O’Connell. The instrument w as developed in 10 field sites: Mr Michael Bartos, Centre for the Study of Sexually Transmissible Disease, Faculty of Health Sciences, Locked Bar 12, La Trobe University, Victoria, Australia; Dr Prabha Chandra, National Institute of Mental Health and Neurosciences (NIMHANS), Bangalore, India; Dr M arcelo Fleck, Department of Psychiatry and Legal Medicine, University of the State of Rio Gr ande do Sul, Rua Ramiro Barc elos 2350, Porto Alegre, Brazil; Dr Leng Bun Hor, NCHADS, Ministry of Health, Phnom Penh, Cambodia; Dr Rachna Bhargava, Department of Psychiatry, All India Institute of Medical Sciences, New Delhi, India; Prof. F. Starace, Consultation Psychiatry and Behavioural Epidemiology Service, Naples, Italy; Dr Svetlana Pkhidenko, Dniepropetrovsk State Medical Academy, Dniepropetrovsk, Ukraine; Dr. Kitikorn Meesapya, Branch of Preventive Mental Health Technical Development, Department of Mental Health, Ministry of Public Health, Bangkok, Thailand; Dr Alan Haworth, Department of Psychiatry, University of Zambia, Lusaka, Zambia; Dr Jane Mutambirwa, Department of Psychiatry, University of Zimbabwe, Harare, Zimbabwe. Analysis was conducted by Prof. S. Skevington at the University of Bath, Department of Psychology, U.K. and at WHO, Geneva. Funding for the project was provided by the FETZER Institute and UNAIDS.
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WHOQOL-HIV INSTRUMENT Instructions This questionnaire asks how you feel about your quality of life, health, and other areas of your life. Please answer all the questions. If you are unsure about which response to give to a question, please choose the one that appears most appropriate. This can often be your first response. Please keep in mind your standards, hopes, pleasures and concerns. We ask that you think about your life in the last two weeks. For example, thinking about the last two weeks, a question might ask: How much do you worry about your health? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
You should circle the number that best fits how much you have worried about your health over the last two weeks. So you would circle the number 4 if you worried about your health "Very much", or circle number 1 if you have worried "Not at all" about your health. Please read each question, assess your feelings, and circle the number on the scale for each question that gives the best answer for you. Thank you for your help
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The following questions ask about how much you have experienced certain things in the last two weeks, for example, positive feelings such as happiness or contentment. If you have experienced these things an extreme amount circle the number next to "An extreme amount". If you have not experienced these things at all, circle the number next to "Not at all". You should circle one of the numbers in between if you wish to indicate your answer lies somewhere between "Not at all" and "Extremely". Questions refer to the last two weeks. F1.2 (F1.2.1) Not at all 1
Do you worry about your pain or discomfort? A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F1.3 (F1.2.3) Not at all 1
How difficult is it for you to handle any pain or discomfort? Slightly 2 Moderately 3 Very 4 Extremely 5
F1.4 (F1.2.5) To what extent do you feel that (physical) pain prevents you from doing what you need to do? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F2.2 (F2.1.3) Not at all 1
How easily do you get tired? Slightly 2 Moderately 3 Very 4 Extremely 5
F2.4 (F2.2.4)
How much are you bothered by fatigue?
None at all 1
A little 2
A moderate amount 3
Very much 4
An extreme amount 5
F3.2 (F4.1.3)
Do you have any difficulties with sleeping?
None at all 1
A little 2
A moderate amount 3
Very much 4
An extreme amount 5
F3.4 (F4.2.3) Not at all 1
How much do any sleep problems worry you? A little 2 A moderate amount 3 Very much 4 An extreme amount 5
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F50.1 (AF21) How much are you bothered by any unpleasant physical problems related to your HIV infection? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F50.2 (SF1.5) To what extent do you fear possible future (physical) pain? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F50.4 (AF2.4) To what extent are you bothered by fears of developing any physical problem? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F4.4 (F6.1.6) Not at all 1
How much do you experience positive feelings in your life? A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F4.1 (F6.1.2) Not at all 1
How much do you enjoy life? A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F4.3 (F6.1.4) Not at all 1
How positive do you feel about the future? Slightly 2 Moderately 3 Very 4 Extremely 5
F5.3 How well are you able to concentrate? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
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F6.1 (F8.1.1) Not at all 1
How much do you value yourself? A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F6.2 (F8.1.3) Not at all 1
How much confidence do you have in yourself? A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F7.2 (F9.1.3) Not at all 1
Do you feel inhibited by your looks? Slightly 2 Moderately 3 Very much 4 Extremely 5
F7.3 (F9.1.4) Not at all 1
Is there any part of your appearance which makes you feel uncomfortable? A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F8.2 (F10.1.3) How worried do you feel? Not at all 1 Slightly 2 Moderately 3 Very 4 Extremely 5
F8.3 (F10.2.2) How much do any feelings of sadness or depression interfere with your everyday functioning?
Not at all 1
A little 2
A moderate amount 3
Very much 4
An extreme amount 5
F8.4 (F10.2.3) How much do any feelings of depression bother you? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F10.2 (F12.1.3) To what extent do you have difficulty in performing your routine activities? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
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F10.4 (F12.2.4)How much are you bothered by any limitations in performing everyday living activities? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F11.2 (F13.1.3) How much do you need any medication to function in your daily life? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F11.3 (F13.1.4) How much do you need any medical treatment to function in your daily life? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F11.4 (F13.2.2) To what extent does your quality of life depend on the use of medical substances or medical aids? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F13.1 (F17.1.3) How alone do you feel in your life? Not at all 1 Slightly 2 Moderately 3 Very much 4 Extremely 5
F15.2 (F3.1.2) How well are your sexual needs fulfilled? Not at all 1 Slightly 2 Moderately 3 Very much 4 Extremely 5
F15.4 (F3.2.3) Are you bothered by any difficulties in your sex life? Not at all 1 Slightly 2 Moderately 3 Very 4 Extremely 5
F16.1 (F20.1.2) How safe do you feel in your daily life? Not at all 1 Slightly 2 Moderately 3 Very 4 Extremely 5
16.2 (F20.1.3) Do you feel you are living in a safe and secure environment? 9
Not at all 1
Slightly 2
Moderately 3
Very much 4
Extremely 5
F16.3 (F20.2.2) How much do you worry about your safety and security? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F17.1 (F21.1.1) How comfortable is the place where you live? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F17.4 (F21.2.4) How much do you like it where you live? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F18.2 (F23.1.5) Do you have financial difficulties? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F18.4 (F23.2.4) How much do you worry about money? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F19.1(F24.1.1) How easily are you able to get good medical care? Not at all 1 Slightly 2 Moderately 3 Very 4 Extremely 5
F21.3 (F26.2.2) How much do you enjoy your free time? Not at all 1 A little 2 Moderately 3 Very much 4 An extreme amount 5
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F22.1 (F27.1.2) How healthy is your physical environment? Not at all 1 Slightly 2 Moderately 3 Very 4 Extremely 5
f22.2 (F27.2.4) How concerned are you with the noise in the area you live in? Not at all 1 A little 2 Moderately 3 Very much 4 An extreme amount 5
F23.2 (F28.1.4) To what extent do you have problems with transport? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F23.4 (F28.2.3) How much do difficulties with transport restrict your life? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
The following questions ask about how completely you experience or were able to do certain things in the last two weeks, for example activities of daily living such as washing, dressing or eating. If you have been able to do these things completely, circle the number next to "Completely". If you have not been able to do these things at all, circle the number next to "Not at all". You should circle one of the numbers in between if you wish to indicate your answer lies somewhere between "Not at all" and "Completely". Questions refer to the last two weeks. F2.1(F2.1.1) Not at all 1
Do you have enough energy for everyday life? A little 2 Moderately 3 Mostly 4 Completely 5
F50.3 (AF2.3) To what extent do you feel any unpleasant physical problems prevent you from doing things that are important to you? Not at all 1 A little 2 Moderately 3 Mostly 4 Completely 5
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F7.1(F9.1.2) Not at all 1
Are you able to accept your bodily appearance? A little 2 Moderately 3 Mostly 4 Completely 5
F10.1 (F12.1.1) To what extent are you able to carry out your daily activities? Not at all 1 A little 2 Moderately 3 Mostly 4 Completely 5
F11.1 (F13.1.1) How dependent are you on medications? Not at all 1 A little 2 Moderately 3 Mostly 4 Completely 5
F14.1 (F18.1.2) Do you get the kind of support from others that you need? Not at all 1 A little 2 Moderately 3 Mostly 4 Completely 5
F14.2 (F18.1.5) To what extent can you count on your friends when you need them? Not at all 1 A little 2 Moderately 3 Mostly 4 Completely 5
F51.1 (AF5.1) To what extent do you feel accepted by the people you know? Not at all 1 A little 2 Moderately 3 Mostly 4 Completely 5
F51.3 (AF5.3) To what extent do you feel accepted by your community? Not at all 1 A little 2 Moderately 3 Mostly 4 Completely 5
F51.4 (AF5.5) How much do you feel alienated from those around you? Not at all 1 A little 2 Moderately 3 Mostly 4 Completely 5
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F17.2 (F21.1.2) To what degree does the quality of your home meet your needs? Not at all 1 A little 2 Moderately 3 Mostly 4 Completely 5
F18.1 (F23.1.1 Have you enough money to meet your needs? Not at all 1 A little 2 Moderately 3 Mostly 4 Completely 5
F20.1 (F25.1.1) How available to you is the information that you need in your day-to-day life? Not at all 1 A little 2 Moderately 3 Mostly 4 Completely 5
F20.2 (F25.1.2) To what extent do you have opportunities for acquiring the information that you feel you need? Not at all 1 A little 2 Moderately 3 Mostly 4 Completely 5
F21.1 (F26.1.2) To what extent do you have the opportunity for leisure activities? Not at all 1 A little 2 Moderately 3 Mostly 4 Completely 5
F21.2 (F26.1.3) How much are you able to relax and enjoy yourself? Not at all 1 A little 2 Moderately 3 Mostly 4 Completely 5
F23.1 (F28.1.2) To what extent do you have adequate means of transport? Not at all 1 A little 2 Moderately 3 Mostly 4 Completely 5
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The following questions ask you to say how satisfied, happy or good you have felt about various aspects of your life over the last two weeks . For example, about your family life or the energy that you have. Decide how satisfied or dissatisfied you are with each aspect of your life and circle the number that best fits how you feel about this. Questions refer to the last two weeks. G2 (G2.1) How satisfied are you with the quality of your life? Dissatisfied 2 Neither satisfied nor dissatisfied 3 Satisfied 4 Very satisfied 5
Very dissatisfied 1
G3 (G2.2)
In general, how satisfied are you with your life? Dissatisfied 2 Neither satisfied nor dissatisfied 3 Satisfied 4 Very satisfied 5
Very dissatisfied 1
G4 (G2.3)
How satisfied are you with your health? Dissatisfied 2 Neither satisfied nor dissatisfied 3 Satisfied 4 Very satisfied 5
Very dissatisfied 1
F2.3 (F2.2.1) How satisfied are you with the energy that you have? Very dissatisfied 1 Dissatisfied 2 Neither satisfied nor dissatisfied 3 Satisfied 4 Very satisfied 5
F3.3 (F4.2.2) How satisfied are you with your sleep? Very dissatisfied 1 Dissatisfied 2 Neither satisfied nor dissatisfied 3 Satisfied 4 Very satisfied 5
F5.2 (F7.2.1) How satisfied are you with your ability to learn new information? Very dissatisfied 1 Dissatisfied 2 Neither satisfied nor dissatisfied 3 Satisfied 4 Very satisfied 5
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F5.4 (F7.2.3) How satisfied are you with your ability to make decisions? Very dissatisfied 1 Dissatisfied 2 Neither satisfied nor dissatisfied 3 Satisfied 4 Very satisfied 5
F6.3 (F8.2.1) How satisfied are you with yourself? Very dissatisfied 1 Dissatisfied 2 Neither satisfied nor dissatisfied 3 Satisfied 4 Very satisfied 5
F6.4 (F8.2.2) How satisfied are you with your abilities? Very dissatisfied 1 Dissatisfied 2 Neither satisfied nor dissatisfied 3 Satisfied 4 Very satisfied 5
F7.4 (F9.2.3)
How satisfied are you with the way your body looks? Dissatisfied 2 Neither satisfied nor dissatisfied 3 Satisfied 4 Very satisfied 5
Very dissatisfied 1
F10.3 (F12.2.3) How satisfied are you with your ability to perform your daily living activities? Very dissatisfied 1 Dissatisfied 2 Neither satisfied nor dissatisfied 3 Satisfied 4 Very satisfied 5
F13.3 (F17.2.3) How satisfied are you with your personal relationships? Very dissatisfied 1 Dissatisfied 2 Neither satisfied nor dissatisfied 3 Satisfied 4 Very satisfied 5
F15.3 (F3.2.1) How satisfied are you with your sex life? Very dissatisfied 1 Dissatisfied 2 Neither satisfied nor dissatisfied 3 Satisfied 4 Very satisfied 5
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F14.3 (F18.2.2) How satisfied are you with the support you get from your family? Very dissatisfied 1 Dissatisfied 2 Neither satisfied nor dissatisfied 3 Satisfied 4 Very satisfied 5
F14.4 (F18.2.5) How satisfied are you with the support you get from your friends? Very dissatisfied 1 Dissatisfied 2 Neither satisfied nor dissatisfied 3 Satisfied 4 Very satisfied 5
F13.4 (F19.2.1) How satisfied are you with your ability to provide for or support others? Very dissatisfied 1 Dissatisfied 2 Neither satisfied nor dissatisfied 3 Satisfied 4 Very satisfied 5
F16.4 (F20.2.3) How satisfied are you with your physical safety and security? Very dissatisfied 1 Dissatisfied 2 Neither satisfied nor dissatisfied 3 Satisfied 4 Very satisfied 5
F17.3 (F21.2.2) How satisfied are you with the conditions of your living place? Very dissatisfied 1 Dissatisfied 2 Neither satisfied nor dissatisfied 3 Satisfied 4 Very satisfied 5
F18.3 (F23.2.3) How satisfied are you with your financial situation? Very dissatisfied 1 Dissatisfied 2 Neither satisfied nor dissatisfied 3 Satisfied 4 Very satisfied 5
F19.3 (F24.2.1) How satisfied are you with your access to health services? Very dissatisfied 1 Dissatisfied 2 Neither satisfied nor dissatisfied 3 Satisfied 4 Very satisfied 5
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F19.4 (F24.2.5) How satisfied are you with the social care services? Very dissatisfied 1 Dissatisfied 2 Neither satisfied nor dissatisfied 3 Satisfied 4 Very satisfied 5
F20.3 (F25.2.1) How satisfied are you with your opportunities for acquiring new skills? Very dissatisfied 1 Dissatisfied 2 Neither satisfied nor dissatisfied 3 Satisfied 4 Very satisfied 5
F20.4 (F25.2.2) How satisfied are you with your opportunities to learn new information? Very dissatisfied 1 Dissatisfied 2 Neither satisfied nor dissatisfied 3 Satisfied 4 Very satisfied 5
F21.4 (F26.2.3) How satisfied are you with the way you spend your spare time? Very dissatisfied 1 Dissatisfied 2 Neither satisfied nor dissatisfied 3 Satisfied 4 Very satisfied 5
F22.3 (F27.2.1) How satisfied are you with your physical environment (e.g. pollution, climate, noise, attractiveness)? Very dissatisfied 1 Dissatisfied 2 Neither satisfied nor dissatisfied 3 Satisfied 4 Very satisfied 5
F22.4 (F27.2.3) How satisfied are you with the climate of the place where you live? Very dissatisfied 1 Dissatisfied 2 Neither satisfied nor dissatisfied 3 Satisfied 4 Very satisfied 5
F23.3 (F28.2.2) How satisfied are you with your transport? Very dissatisfied 1 Dissatisfied 2 Neither satisfied nor dissatisfied 3 Satisfied 4 Very satisfied 5
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F13.2 (F17.2.1) Do you feel happy about your relationship with your family members? Very unhappy 1 Unhappy 2 Neither happy nor unhappy 3 Happy 4 Very happy 5
G1 (G1.1)
How would you rate your quality of life?
Very poor 1
Poor 2
Neither poor nor good 3
Good 4
Very good 5
F15.1 (F3.1.1) How would you rate your sex life? Very poor 1 Poor 2 Neither poor nor good 3 Good 4 Very good 5
F3.1(F4.1.1)
How well do you sleep?
Very poor 1
Poor 2
Neither poor nor good 3
Good 4
Very good 5
F5.1(F7.1.3) Very poor 1
How would you rate your memory? Poor 2 Neither poor nor good 3 Good 4 Very good 5
F19.2 (F24.1.5) How would you rate the quality of social services available to you? Very poor 1 Poor 2 Neither poor nor good 3 Good 4 Very good 5
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The following questions refer to how often you have felt or experienced certain things, for example the support of your family or friends or negative experiences such as feeling unsafe. If you have not experienced these things at all in the last two weeks, circle the number next to the response "never". If you have experienced these things, decide how often and circle the appropriate number. So for example if you have experienced pain all the time in the last two weeks circle the number next to "Always". Questions refer to the last two weeks. F1.1 (F1.1.1) Never 1
How often do you suffer (physical) pain? Seldom 2 Quite often 3 Very often 4 Always 5
F4.2 (F6.1.3) Never 1
Do you generally feel content? Seldom 2 Quite often 3 Very often 4 Always 5
F8.1 (F10.1.2) How often do you have negative feelings, such as blue mood, despair, anxiety, depression? Never 1 Seldom 2 Quite often 3 Very often 4 Always 5
F51.2 (AF5.2) How often do you feel you are discriminated against because of your health condition? Never 1 Seldom 2 Quite often 3 Very often 4 Always 5
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The following questions refer to any "work" that you do. Work here means any major activity that you do. This includes voluntary work, studying full-time, taking care of the home, t aking care of children, paid work or unpaid work. So work, as it is used here, means the activities you feel take up a major part of your time and energy. Questions refer to the last two weeks. F12.1 (F16.1.1) Are you able to work? Not at all 1 A little 2 Moderately 3 Mostly 4 Completely 5
F12.2 (F16.1.2) Do you feel able to carry out your duties? Not at all 1 A little 2 Moderately 3 Mostly 4 Completely 5
F12.4 (F16.2.1) How satisfied are you with your capacity for work? Very dissatisfied 1 Dissatisfied 2 Neither satisfied nor dissatisfied 3 Satisfied 4 Very satisfied 5
F12.3 (F16.1.3) How would you rate your ability to work? Very poor 1 Poor 2 Neither poor nor good 3 Good 4 Very good 5
The next few questions ask about how well you were able to move around, in the last two weeks. This refers to your physical ability to move your body in such a way as to allow you to move about and do the things you would like to do, as well as the things that you need to do.
F9.1(F11.1.1) How well are you able to get around? Very poor 1 Poor 2 Neither poor nor good 3 Good 4 Very good 5
F9.3(F11.2.2) How much do any difficulties in mobility bother you? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
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F9.4(F11.2.3) To what extent do any difficulties in movement affect your way of life? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F9.2(F11.2.1) How satisfied are you with your ability to move around? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
The following few questions are concerned with your personal beliefs, and how these affect your quality of life. Th ese questions refer to religion, spirituality and any other beliefs you may hold. Once again these questions refer to the last two weeks. F24.1 (F29.1.1) Do your personal beliefs give meaning to your life? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F24.2 (F29.1.3) To what extent do you feel your life to be meaningful? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F24.3 (F29.2.2) To what extent do your personal beliefs give you the strength to face difficulties? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F24.4 (F29.2.3) To what extent do your personal beliefs help you to understand difficulties in life? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F52.2 (AF7.3) To what extent are you bothered by people blaming you for your HIV status? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
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F52.3 (AF7.4) How guilty do you feel about being HIV positive? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F52.4 (SF6.8) To what extent do you feel guilty when you need the help and care of others? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F53.1 (AF8.1) To what extent are you concerned about your HIV status breaking your family line and your future generations? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F53.2 (AF8.2) To what extent are you concerned about how people will remember you when you are dead? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F53.3 (AF9.4) To what extent do any feelings that you are suffering from fate or destiny bother you? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F53.4 (SF8.5) How much do you fear the future? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F54.1 (AF10.1) How much do you worry about death? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F54.2 (AF10.3) How bothered are you by the thought of not being able to die the way you would want to ? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F54.3 (AF10.6) How concerned are you about how and where you will die? 22
Not at all 1
A little 2
A moderate amount 3
Very much 4
An extreme amount 5
F54.4 (AF10.7) How preoccupied are you about suffering before dying? Not at all 1 A little 2 A moderate amount 3 Very much 4 An extreme amount 5
F52.1 (AF7.2) How much do you blame yourself for your HIV infection? Not at all 1 A little 2 Moderately 3 Mostly 4 Completely 5
IMPORTANCE QUESTIONS.
The following questions ask about how important various aspects of your life are to you. We ask that you think about how much these affect your quality of life. F or example one question asks about how important sleep is to you. If sleep is not important to you, circle the number next to “not important”. If sleep is “very important to you, but not “extremely important”, you should circle the number next to “Very important”. Unlike earlier questions, these questions do not refer only to the last two weeks. ImpG.1 How important to you is your overall quality of life? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
ImpG.2 How important to you is your health? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
Imp1.1 How important to you is it to be free of any pain? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
Imp2.1 How important to you is having energy? 23
Not important 1
A little important 2
Moderately important 3
Very important 4
Extremely important 5
Imp3.1 How important to you is restful sleep? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
Imp50.1 How important to you is it to feel free from unpleasant physical symptoms related to your HIV infection? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
Imp4.1 How important to you is it to feel happiness and enjoyment of life? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
Imp4.2 How important to you is it to feel content? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
Imp4.3 How important to you is it to feel hopeful? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
Imp5.1 How important to you is being able to learn and remember important information? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
Imp5.2 How important to you is being able to think through everyday problems and make decisions? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
Imp5.3 How important to you is it to be able to concentrate? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
Imp6.1 How important to you is feeling positive about yourself?
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Not important 1
A little important 2
Moderately important 3
Very important 4
Extremely important 5
Imp7.1 How important to you is your body image and appearance? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
Imp8.1 How important to you is it to be free of negative feelings (sadness, depression, anxiety, worry…)? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
Imp9.1 How important to you is it to be able to move around? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
Imp10.1 How important to you is being able to take care of your daily living activities (e.g. washing, eating, dressing)? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
Imp11.1 How important to you is it to be free of dependence in medications or treatments? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
Imp12.1 How important to you is being able to work? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
Imp13.1 How important to you are relationships with other people? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
Imp14.1 How important to you is it to support others? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
Imp15.1 How important to you is your sexual life?
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Not important 1
A little important 2
Moderately important 3
Very important 4
Extremely important 5
Imp51.1 How important to you is it to feel included socially? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
Imp16.1 How important to you is feeling physically safe and secure? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
Imp17.1 How important to you is your home environment? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
Imp18.1 How important to you are your financial resources? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
Imp19.1 How important to you is it being able to get adequate health care? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
Imp19.2 How important to you is it being able to get adequate social help? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
Imp20.1 How important to you are chances for getting new information or knowledge? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
Imp20.2 How important to you are chances to learn new skills? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
Imp21.1 How important to you is relaxation/leisure?
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Not important 1
A little important 2
Moderately important 3
Very important 4
Extremely important 5
Imp22.1 How important to you is your environment? (e.g. pollution, climate, noise, attractiveness)? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
Imp23.1 How important to you is adequate transport in your everyday life? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
Imp24.1 How important to you are your personal beliefs? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
Imp52.1 How important is forgiveness to you? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
Imp53.1 How important to you is the future? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
Imp54.1 Are thoughts about death and dying important to you? Not important 1 A little important 2 Moderately important 3 Very important 4 Extremely important 5
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ABOUT YOU
What is your gender? How old are you? What is the highest education you received? What is your marital status?
Male / Female (age in years) None at all / Primary / Secondary / University/Postgraduate Single/ Married/ Living as married/ Separated/ Divorced/ Widowed
How is your health? (G1.2) Very poor 1 Poor 2 Neither poor nor good 3 Good 4 Very good 5
Do you consider yourself currently ill?
Yes / No
If something is wrong with your health what do you think it is?___________________________ Please respond to the following questions if they are applicable to you: What is your HIV serostatus? Asymptomatic / Symptomatic / AIDS converted
In what year did you first test positive for HIV? _____________________________________ In what year do you think you were infected? _____________________________________ How do you believe you were infected with HIV? (circle one only): Sex with a man / Sex with a woman / Injecting drugs / Blood products / Other (specify)
Do you have any comments about the questionnaire?
THANK YOU FOR YOUR TIME AND HELP
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