Palliative care-related problems in the first three months following HIV diagnosis in East Africa
: a longitudinal study

    Student thesis: Doctoral ThesisDoctor of Philosophy


    HIV 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.
    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).
    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
    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
    Date of Award2012
    Original languageEnglish
    Awarding Institution
    • King's College London
    SupervisorRichard Harding (Supervisor) & Irene Higginson (Supervisor)

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