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06 Booysen Food For Thought
1. Some first food for thought: selected
baseline findings from the Effective Aids
Treatment and Support in the Free State
(FEATS) study
Frikkie Booysen, University of the Free State
Alok Bhargava, Houston University
Damien de Walque, The World Bank
Mead Over, Center for Global Development
Michele Pappin, University of the Free State
5th SAHARA conference on Socio-Cultural Responses to HIV
02 December 2009, Gallagher Estate, Johannesburg
2. Acknowledgement
• The financial support of The World Bank’s Research
Committee, its Development Economics Research
Group (DECRG), and the Bank-Netherlands Partnership
Programme (BNPP)
• Fieldwork managers and fieldworkers of the Centre for
Health Systems Research & Development (CHSR&D)
• Study participants in the ART programme who willingly
sacrificed their time and energy to participate in this
research, and frankly shared their views and
experiences.
• The management and health care staff of the Free State
Department of Health and of several local municipalities,
who facilitated access to study participants
3. Background (1)
• The Effective Aids treatment and support in the
Free State (FEATS) study aims to:
– Inform the effective and sustainable scale-up of ART
as part of the National Strategic Plan (NSP)
– Pilot and evaluate adherence and nutritional support
for effective and sustainable ART
– Investigate the positive/negative household
externalities of ART
4. Study design (1)
• Prospective cohort study
• Experimental design is a combination of:
– Group time-series, quasi- or field experiment
(‘ARV treatment’) and
– Zelen-type double randomised consent (‘peer
adherence and nutritional support’) design
5. Study design (2)
• ART nurses working at 12 phase-I ART clinics
across five Free State districts recruited public
sector ART patients into the study during a 12-
month period [Oct ’07 to Oct ’08]
• Inclusion criteria:
– Adult (18+ years)
– Initiated ART in past 4 weeks
– Resides in community where clinic based
• Comparison households: randomly sampled
from relevant communities
6. Study design (3)
Group A: Group B:
216 ART households receiving 216 ART households: A +
treatment and support provided in bi-weekly visits by trained ARV
the existing programme peer adherence supporter (PAS)
Group C: Group D:
216 ART households: A + B + 208 comparison households
nutritional supplement (canned randomly sampled from the
food) delivered by PAS relevant communities
7. Study design (4)
• Ethical clearance: Faculty of Health Sciences,
University of the Free State
• Data collection (baseline + two rounds of follow-
up interviews):
– Patient survey and clinical records in patient files
– Household survey, including individual interviews with
household members (10+ years)
– Facility survey, including interviews with ARV
coordinators and provider questionnaires
8. Figure 2: Study design (FEATS)
Comparison households Comparison households
Current public sector ART only = [A]
Public sector clients enrolled in the
[A] + Peer adherence support = [B]
ART programme
[B] + Nutritional support = [C]
1st follow-up 2nd follow-up
Recruitment Baseline survey Randomisation
survey (F1) survey (F2)
April 2008 - January - June
October 2007 - October 2008 October 2008
October 2009 2010
9. Three selected, potentially
important questions…
– Nutritional status and food security
– Need and access @ support groups
– Symptoms of anxiety and depression
10. Background
… what challenges do food insecurity and malnutrition, worsened by the present
economic and food crises, pose in the context of the HIV and AIDS epidemic?
Prevention: Care and treatment: Impact mitigation:
• unprotected transactional • PLWA have 10-30% • erodes household
sex greater energy livelihoods, thus
requirements constraining resilience and
• distress migration → risk
limiting coping/response
of infection for migrants • more frequent and severe
options
and others OIs and more rapid
progression to Aids • impacts on intra-
• lower immune status
household time allocation
• Assist in curbing side
• increased risk of vertical and other decisions
effects and enhancing
transmission of HIV
adherence for those on • increased vulnerability of
ARV treatment OVC
• improved efficacy of ART
• lower survival rates
following ART initiation
Source: Gillespie (2008)
11. Figure 3: Adult nutritional status, by comparison group
100%
17.2 19.5 17.1
90%
27.6
80%
20.7
70% 22.9 25.7
20.1
60%
50%
40%
49.6
47.5 48.4
41.9
30%
20%
10%
12.5 10.1 10.5 8.7
0%
ART patients (n=623) Other adults living with ART Adults in comparison South Africa (n=13,089)
patients (n=667) households (n=399)
Underweight (BMI < 18.5) Normal (18.5 = BMI < 25) Overweight (25 = BMI < 30) Obese (BMI = 30)
12. Table 3: Correlates of malnourishment among adults
Explanatory variable OR 95% CI
Female (yes/no) 0.469 *** 0.305 0.720
EQ-5D 0.634 ** 0.421 0.956
Smoke (yes/no) 1.621 * 0.954 2.755
Ownership of large livestock (number) 1.065 * 0.996 1.138
Ownership of small livestock (number) 0.897 ** 0.814 0.990
Household head's age 1.089 * 0.990 1.199
PLWA in household (yes/no) 1.728 * 0.996 2.998
Ever received food supplements (yes/no) 1.889 ** 1.022 3.491
Sample (n) 1,461
Wald chi2(p-value) 78.4 (<0.001)
Pseudo R-square 0.080
Predicted success (%) 89.8
13. Table 2: Nutritional status across ‘treatment career’
Baseline in Pre-ART Household Post-interview South Africa
clinical data initiation interview in clinical data (DHS 2004)
Severely malnourished 5.9 7.6 2.9 3.4
Malnourished 10.2 8.5 8.0 5.9
Underweight 16.1 16.1 10.9 9.3 8.7
Normal 49.7 50.2 50.2 50.6 48.4
Overweight 19.1 18.7 22.1 21.2 25.7
Obese 14.8 14.8 16.6 18.7 17.1
Sample (n) 235 235 235 235 13,089.0
Total 100.0 100.0 100.0 100.0 100.0
14. Figure 4: Household food security, by comparison group
60
51.6
50
40 38.9
31.9
29.1
30
26.0
20
16.4
10
3.2 3.0
0
Food secure Food insecure without Food insecure with hunger Food insecure with severe
hunger hunger
Comparison households (n=185) Patient households (n=574)
15. Figure 5: Adult and child food security, by group
100%
90% 19.2
28.1
37.2
80%
49.3
70%
60%
48.5
22.9
50%
52.4
40%
29.9
30%
20% 39.9
32.3
10% 20.8 19.5
0%
Comparison households Patient households Comparison households Patient households
Adults Children
High Low Very low
17. Concluding comments
• An integrated, comprehensive response to HIV
and AIDS, requires effective, sustainable and
scalable nutritional, food security and
dietary/lifestyle interventions to enhance both
the prevention and treatment efforts in the fight
against HIV and AIDS
… what research, or more specifically,
programme evaluations, are required to help
inform the above response?
18. Background (1)
• An integrated, multi-faceted response is required for an
effective, sustainable ARV treatment programme
• Sustained, long-term adherence crucial
• HIV/AIDS support groups a potentially important source
of adherence and psychosocial support to ART clients
• Yet, little is known regarding the demand, access and
willingness-to-pay for belonging to an HIV and AIDS
support group
19. Background (2)
• Rhine (2009: 369) points out that support groups in the
context of the African HIV epidemic are more than “spaces
for discussion of social and health well-being” or “institutions
functioning solely to cultivate self-responsible and
economically empowered patients” and fulfill other functions
in communities
• Simoni et al (2007) conducted a RCT to evaluate the use of
peer support groups as a tool for enhancing adherence to
ART, but found no significant treatment effects… yet, the
authors attribute their null finding to the short duration and
low intensity of the intervention as well as the heterogenous
nature of their study population
… a preliminary search of the literature failed to reveal any
other evaluations of group-based adherence support
interventions for antiretroviral treatment
20. Figure 3a: Access to support groups, treatment
supporters and community health workers
Community health
Support group Treatment supporter worker
Previously only 2.0 2.3 2.0
Currently 7.3 59.4 4.0
Never 90.7 38.3 94.0
Total 100.0 100.0 100.0
21. Figure 4: Access, need, cost and willingness-to-pay to
belong to an HIV/AIDS support group
Willing to pay Willingness-to-pay
Access (yes/no) Need (yes/no) Pay (yes/no) Cost (ZAR)
(yes/no) (ZAR)
Previously 84.6% 54.5% Mean: R30.00
[13/655 = 2.0%] [11/13] [6/11] Median: R15.00
IQR: R10.00 - R30.00
Currently 58.3%* Mean: R18.90 10.4%** Mean: R50.00
[48/655 = 7.3%] [28/48] Median: R9.00 [5/48] Median: R30.00
IQR: R8.00 - R20.00 IQR: R20.00 - R40.00
Never 68.0% 61.4% Mean: R24.78
[594/655 = 90.7%] [404/594] [248/404] Median: R20.00
IQR: R10.00 - R28.00
68.4% 55.9%*** Mean: R25.39
Total
[415/607] [259/463] Median: R20.00
IQR: R10.00 - R30.00
Notes : * Proportion of current support group members reporting either actual costs for last visit or normally incurring cost for transport, food or membership
to participate in meetings; ** Reflects proportion of current support group members who are willing to pay an additional amount to belong to a support group;
*** Reflects proportion willing to pay among (a) current support groups members and (b) non-members expressing a demand for membership.
22. Figure 5: Accessibility of support groups Figure 6: Organisation of support groups
100 100
90 90
80 80
72.9
70
70
64.6
Percentage (%)
60
Percentage (%)
60
50 46.8
50
40
40
30
23.4 30
20
18.8
20
10 12.5
2.1 10
4.2
0
Travel more than short walk Pay for transport Pay for food Pay membership fee 0
from home
DoH or clinic staff NGO Self Church
Figure 7: Meeting place of support groups Figure 8: Frequency of support group meetings
100 100
90 90
80 80
70 66.6 70
Percentage (%)
Percentage (%)
60 60
50 50
40 40
31.3
30 30 27.1
20.8 20.8
20 20
10.7
8.3
10 6.2 10
4.1 4.1
0 0
Clinic Other health Church NGO School Other More than once per week Once per week Two or three times per Once per month
facilities month
23. Figure 9: Composition of support groups
100
90
95.8
Composition:
80
70.2
Comprise persons on ART, HIV-
70
positive persons not yet on ART,
60
Percentage (%)
56.2
50
52 HIV-negative persons, and ones
40
whose status is unknown to the
30 member who responded to the
20 survey… this has NB implications?
10
0
HIV+ and on ART HIV+ but not on ART Known to be HIV-negative HIV status unknown
Figure 10: Participation of support groups in prevention
activities
100
Activities: 90
80 76.6
Relatively high participation in 70
range of prevention activities… Percentage (%) 60
this has NB implications? 50 46.6
40
30.2
30
20
10
0
Distribute condoms Visit schools and other institution to Visit bars, hotels and other hot spots
talk about HIV and AIDS to talk about HIV and AIDS
24. Table 1: Correlates of need, access, payment and WTP
NEED ACCESS PAY WTP
Age 0.061 0.032 -0.084 -0.068
Age2 -0.001 * 0.000 0.001 0.001
Education (comparison = none)
Some primary -0.135 -0.701 0.463 0.397
Some secondary -0.172 -0.584 0.650 0.553 **
Grade 12 or higher -0.341 -0.953 * 0.707 0.615 **
Household size -0.012 0.040 0.123 *** -0.028
Dependency ratio 0.346 -0.146 -0.546 0.614 *
Marital status (comparison = single)
Married and cohabiting -0.447 *** 0.435 * -0.002 -0.044
Married but not cohabiting -0.573 *** 0.760 ** 0.117 0.073
Divorced, separated or widowed 0.031 0.139 0.074 0.085
Stigma 0.062 0.033 -0.119 -0.196 ***
Disclosure (comparison = disclosed to none)
Disclosed to some only -0.256 -0.255 0.209
Disclosed to all 0.827 ** -0.174 -0.198
Avoidant coping 0.027 -0.143 *** 0.070 0.038
Supportive coping 0.335 *** -0.038 0.112 -0.029
Positive coping -0.470 * 0.135 0.303 0.208
Acceptance coping 0.953 * -0.365
Health-related quality of life (EQ-VAS) -0.008 ** -0.003 0.002 0.004
Reported symptions of depression (yes/no) -0.347 0.154 0.615 ** 0.592 **
Reported symptions of anxiety (yes/no) 0.127 -0.427 0.297 -0.083
Access to treatment buddy (yes/no) -0.012 0.576 *** 0.016 0.116
Visited by community health worker (yes/no) -0.270 0.455 -0.767 * 0.204
Previously belonged to a support group (yes/no) 1.024 ** -0.473 0.308
Treatment duration (months) 0.041 0.002 -0.142 ** 0.145 **
Previously on ART (yes/no) 0.021 0.486 1.015 ** 0.172
Sample (n) 510 394 372 240
Wald chi2 or F statistic (p-value) 75.31 (<0.001) 50.04 (0.003) 45.15 (0.028) 2.13 (0.001)
Pseudo R 2 or R 2 0.106 0.130 0.092 0.174
Successful prediction (%) 70.6 89.3 63.7
Note: Results are for probit [NEED, ACCESS, PAY] and linear [WTP] regression models respectively. WTP model include non-zero WTP
values only. Models were also adjusted for gender, self-reported adherence, income, employment status, and time known HIV+ status.
25. Limitations
• Generalisation: data does not allow generalisation beyond the South
African and even perhaps beyond the Free State setting
• Selection processes: choices of demand → access and of pay → WTP
may be characterised by selection, thus requiring estimation of Heckman
selection models
• Network-like nature of support: use of SEM may be feasible given
multiplicity of (other) support types, which may be substitutes or
complements for support groups
• Simultaneity and/or endogeneity: cross-sectional data cannot reveal
dynamics of demand for and participation in HIV and AIDS support
groups among public sector ART clients
• Study dynamics: introduction during experimental phase of the study of
individual peer adherence support are likely to crowd out demand and
WTP for support groups
26. Concluding comments
• Large, unmet demand for HIV and AIDS support groups among public
sector ART clients
• ART clients attribute relatively large, non-zero benefits to membership of
a support group
• Nature of membership and activities of existing support groups suggest
that such groups may play an important role, not only in treatment
support, but also in HIV prevention activities
• Importance of coping, disclosure, stigma and depression as correlates of
demand, access and WTP hint at the important role of support groups as
means of psycho-social support to ART clients
• Importance of past support group membership and access to treatment
supporter implies that complementarity and substitutability of different
means of (adherence) support should be investigated
27. Why does mental health matter?
• Globally, unipolar depressive disorders is projected to be the second
primary cause of burden of disease by 2030 next to HIV and AIDS (Mathers
and Loncar, 2006)
• In South Africa, it is estimated that in the year 2000, HIV and AIDS
represented the most important cause of loss of disability adjusted life year,
and unipolar depressive disorders the tenth leading cause (Bradshaw et al,
2003)
• National Income Dynamic Study [CES-D 10]: prevalence of depression
among women and men 36% and 27% (Ardington and Case, 2009)
• HIV and AIDS and mental illness are interconnected. Depression is
associated with risky sexual behaviour (WHO, 2001), which may result in
contracting HIV. HIV and AIDS may lead to symptoms of anxiety and
depression when people learn their HIV+ status
… as a result, mental health matters for long-term treatment adherence and
sustainable, effective treatment programmes
28. Summary statistics
98.3% African
76.0% Female
65.9% Single
Hospital Anxiety and Depression Scale (HADS):
31.3% Symptoms of anxiety
24.8% Symptoms of depression
29. Table 1: Correlates of symptoms of anxiety and
depression in public sector Free State ART clients
Anxiety Depression
OR 95% Conf. Interval OR 95% Conf. Interval
Coping scale 0.029 *** 0.008 0.115 0.060 *** 0.015 0.236
Stigma scale 1.553 *** 1.152 2.093 1.285 0.914 1.806
Condom use and partner knows HIVstatus (comparsion group = no sex)
Always use condom and partner knows HIV status 1.332 0.714 2.486 1.154 0.613 2.173
Inconsistent condom use and partner knows HIV status 0.812 0.280 2.351 0.359 * 0.113 1.141
Always condom use and partner don't know status 0.446 0.048 4.100 0.172 0.010 2.977
Inconsistent condom use and partner don't know HIV status 0.466 0.086 2.531 0.284 0.053 1.516
Socio-economic status (comparison group = grant holder)
Other grant holder in household 1.422 0.482 4.198 0.491 0.154 1.563
Employment 0.748 0.341 1.644 1.289 0.585 2.838
Support within the household 0.486 * 0.231 1.027 0.812 0.388 1.700
Support outside the household 0.862 0.283 2.626 1.848 0.631 5.407
Other support 1.042 0.363 2.989 1.863 0.681 5.091
Time since first HIV+ test 1.008 0.996 1.020 1.012 ** 1.001 1.022
Self reported side effect (comparison group = none)
Somewhat disruptive side effects 1.740 0.872 3.474 1.193 0.578 2.464
Very disruptive side effects 3.905 *** 1.893 8.057 2.136 ** 1.016 4.493
Hospitalisation in past 6 months (yes/no) 2.140 * 0.906 5.054
EQ-5D 0.564 * 0.309 1.027
Sample size 394 408
Wald-statistic 81.5 64.3
P-value <0.001 <0.02
R2 0.2 0.2
% successfully predicted 78.6 79.2
30. Prevalence of symptoms of anxiety and depression:
Estimated at 31.3% and 24.8%, respectively
Study in Brazil which also used the HADS to assess symptoms of
anxiety and depression among patients who initiated ART reported
similar prevalence rates namely, namely 35.8% and 21.8%
(Nogueira Campos et al, 2006)
However, other studies from South Africa report much lower rates of
anxiety (Olley et al, 2003) and much higher rates of depression
(Olley et al, 2003; Moosa et al, 2005; Simbayi et al, 2007)
… why the latter differences?
31. Correlates of symptoms of both anxiety and depression:
• Lack of coping and severe side effects associated with an increased
likelihood of symptoms of both anxiety and depression
• Symptoms of anxiety: Symptoms of depression:
reliance on a social welfare grant earlier HIV diagnosis
HIV/AIDS-related stigma inconsistence condom use
poorer health status recent hospitalisation
… when we use a biprobit model to jointly estimate the coefficients
on the correlates and symptoms of anxiety and depression, given
the high correlation between the two, the results remain similar…
32. Limitations
• Mental health and other scales: how valid and culturally sensitive and
relevant are these measures to our particular study population?
• Selection bias: Study participants represented those HIV-positive individual
who gained access to the public sector antiretroviral treatment programme
and successfully completed drug readiness training. Patients suffering from
anxiety and depression may have been be less likely to seek care, to
adhere and complete drug readiness, and to initiate treatment, hence
possibly being under represented in the study.
• Cross-sectional data: follow-up interviews currently in field will help explore
role of various causal mechanisms and/or processes, including symptoms
of anxiety, depression and other mental illness as both cause and effect of
other important treatment dynamics and experiences
33. Concluding comments
ART programmes should incorporate the following:
(1) a brief, standardised cultural-specific tool to diagnose anxiety and depression;
(2) screening for anxiety and depression;
(3) appropriate treatment for those diagnosed with anxiety and depression;
(4) additional, equitable distributed financial and human resources for mental health;
(5) use of state-of-the-art and best-practice in order to ensure treatment success;
(6) equipping ART patients with positive coping skills during drug readiness training;
(7) tailor-made and tested anti-stigma programmes.
