Health Related Quality of Life studies in Uganda, Kenya, South Africa and Ghana

1. HRQoL studies in Uganda,
Kenya, South Africa and
Ghana
Dr. Antonieta Medina Lara
ABBA Partners Meeting 20th – 21st May 2010

2. BOCCONI Centre for Research in Healthcare Management
Health Economics
• ECHOUTCOME
Methodological work on assessment of Health Outcomes in
particular Quality of Life Adjusted Years (utilities) in 27
European countries
Global Health
• HRQoL assessment for the ARROW trial
• Economic analysis of implementing DART
• Methodological work on costing HIV/AIDS interventions with UNAIDS,
WHO & Global Fund
• Methodological work on costing interventions for OVC with UNICEF
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3. BACKGROUND
• HIV/AIDS is recognised to affect both the life expectancy
and the quality of life of individuals
• Evidence from clinical trials has demonstrated that ART
is an effective intervention for improving the quality of
life of HIV infected individuals
• What is the impact of ART on quality of life beyond
clinical markers?
• Are there emerging topics from country comparisons?
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4. HRQoL IMPACT BEYOND
CLINICAL MARKERS
• Physical improvement – more energy and strength,
ability to take for oneself, less time bed ridden
• Better mental health – hope for longer and better life,
seeing children grow up
• Psychological well-being – ability to share with
others receiving treatment experiences, desires, fears
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5. QUALITY OF LIFE MEANING
?
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6. QUALITATIVE METHODS
Focus Group Discussions and In-Depth Interviews have been
used to obtain data on how ART has affected individual’s
quality of life and have provided in-depth understanding of
situations, beliefs, attitude and behavior of individuals
receiving ART in order to prepare summary research briefs
Uganda
Kenya
Emerging
topics
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7. KEY THEMES UGANDA
The analyses are taking into account: gender, receiving and not
receiving ART, onset of ART and a year after ART
• Stigma
• Poverty and other socio economic constraints
• Adherence – currently working on it
• Coping with HIV/AIDS and with ART
• Sexual and reproductive needs (partner preferences,
contraception, pregnancy, condom use, abortion)
• Disclosure
• Dealing with the future (fear of death, orphaning of children,
investing for the future
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8. KENYA HRQOL
STUDY OBJECTIVES
• To describe the perceptions of QoL and HRQoL from
the perspectives and experiences of PLHIV, community
members and policy makers
• To identify factors that enhance and /or constrain
HRQoL within the context of HIV infection
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9. KENYA HRQOL
Key Informant In-depth
Category of Participants FGDs Interviews Interviews Narratives
PLHIV
1. PLHIV - men on ART 2
2. PLHIV – men not on ART 2
3. PLHIV - women on ART 3
4.PLHIV - women not on ART 3
Community members 1
5. Caregivers of PLHIV 1
6.CHWs 2
6. Men 2
7. Women 4
8. Youth(Female 2, male 2)
9. Service providers 3
10.Policy/programme managers 3
11. PLHIV on ART 40 3
12. PLHIV not on ART 7 3
Total 20 6 47 6
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10. GHANA HRQOL
A qualitative study on: The Impact of HIV/AIDS and ART on
the Health Related Quality of Life of Persons living with
HIV/AIDS in Ghana
Study objectives:
1. To assess the perceptions and concepts of health and
quality of life among PLHA
2. To determine factors that affect the HRQoL of PLHA
3. To compare the impact of ART on the HRQoL of PLHA
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11. GHANA TIMETABLE
• Ethical approval received on the third week of May
• Data collection end of June – mid Sept
• Analysis mid Dec
• Writing up and first draft mid Feb
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12. FURTHER WORK
Ghana
Emerging
Uganda
Kenya
topics
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13. QUANTITATIVE ANALYSES
• Longitudinal analysis of the MOS-HIV and the
WHOQOL-HIV - Uganda
• Quality Adjusted Life Years in Uganda and South
Africa
• Cost-effectiveness analysis of different models of care
• Health states analysis in order to obtain utilities
• Longitudinal analysis using Preference Elicitation
Methods - Uganda

14. UGANDA OUTPUTS
Nyanzi Wakholi, B; Medina Lara, A; Munderi P, Gilks C and Grosskurth
Heiner on behalf of the DART Trial Team. Coping with ART: Challenges of
ART and their implications for adherence among HIV infected Ugandans
Medina Lara, Jesse Kigozi, Jovita Amurwon, Lazarus Muchabaiwa,
Barbara Nyanzi Wakholi, Sarah Walker, Ronnie Kasirye, Francis Ssali,
Heiner Grosskurth, Abdel Babiker, Cissy Kityo, Paula Munderi, James
Hakim, Peter Mugyenyi, Di Gibb, Andrew Reid, Janet Darbyshire and
Charlie Gilks on behalf of the DART Trial. Cost Effectiveness Analysis Of
Routine Laboratory Or Clinically Driven Strategies For Monitoring Anti-
Retroviral Therapy In Uganda And Zimbabwe (under review)
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15. UGANDA HOUSEHOLD HRQOL
STUDY SOCIAL MAPPING
Eight social mapping exercises (four with women and four with men) were
conducted in four villages within a 20km radius from the 3 major HIV/AIDS
treatment institutions
Gender differences were observed in:
- education levels with men having higher education than the females
- perceptions of socio-economic activities. Women categorised more
domestic related activities while men were more commercial orientated.
2. High levels of unemployment and poverty were reported by all participants
3. Poverty was blamed to be the reason for people to indulge in unsafe sex in
order to meet their economic needs
4. Few health facilities existed in the area
5. The fear to test for HIV/AIDS, lack of information on HIV/AIDS and the lack
of condoms were commonly reported to contribute to the spread of
HIV/AIDS
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