Abstract
BackgroundHIV policy states that palliative care is required from diagnosis onward, but evidence
of the prevalence, severity and duration of patient-centred problems at HIV diagnosis
is very limited, particularly in Africa. This thesis aims to determine palliative carerelated
problems reported by outpatients over three months from diagnosis, taking a
patient-centred approach.
Methods
A prospective observational cohort was conducted in Kenya and Uganda. Twelve
HIV facilities each consecutively recruited 100 adults and those diagnosed within 14
days previously were selected. Outcomes were the seven patient-response items of
the APCA African POS, a validated instrument completed at four monthly intervals.
Cross-sectional analysis used ordinal logistic regression (cross-sectional
multivariate), proportion of net change (longitudinal univariate) and population averaged
fixed-effects conditional logistic regression (longitudinal multivariate).
Results
Among 438 participants (aged 18-59, 67% women), problems are highly prevalent at
diagnosis (47% received no help and advice, 11% severe worry, 6% severe pain).
Problems decrease over time on average but many persist after three months (e.g.
28% unable to share feelings). Physical problems decrease most rapidly,
psychosocial more slowly. Poverty is a risk factor for pain, symptoms and difficulty
finding life worthwhile(OR=0.8-0.9). Five outcomes are exacerbated by limited
physical function(OR=1.6-3.1) but none are associated with CD4 count. Uniquely,
difficulty sharing feelings is more common over time for those with full physical
function (OR=0.7) and the highest relative wealth(OR=1.2). Psychosocial and
spiritual problems are more severe in Uganda (OR=2.7-3.3). Patients taking antiretroviral therapy have fewer symptoms, more peace, and more
help/advice(OR=0.6=0.7).
Conclusion
This thesis presents the highest quality evidence of patient-reported problems at HIV
diagnosis. Physical, psychological, social and spiritual problems are common and
severe, requiring holistic assessment and management. The findings are relevant to
service development in the context of scaled-up testing services for access to
antiretroviral therapy. Staff need palliative care training, with support from specialist
centres for intractable problems. This research contributes longitudinal analysis
techniques appropriate for resource-limited settings, helping overcome research
barriers.
| Date of Award | 2012 |
|---|---|
| Original language | English |
| Awarding Institution |
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| Supervisor | Richard Harding (Supervisor) & Irene Higginson (Supervisor) |