Wellbeing among sub-Saharan African patients with advanced HIV and/or cancer: an international multicentred comparison study of two outcome measures

Richard Harding,Liz Gwyther,Richard A Powell,Eve Namisango,Lucy Selman,Faith Mwangi-Powell,Richard J Siegert,Nancy Gikaara,Zippy Ali,Irene J Higginson

doi:10.1186/1477-7525-12-80

Abstract

BackgroundDespite the high mortality rates of HIV and cancer in sub-Saharan Africa, there are few outcome tools and no comparative data across conditions. This study aimed to measure multidimensional wellbeing among advanced HIV and/or cancer patients in three African countries, and determine the relationship between two validated outcome measures.MethodsCross-sectional self-reported data from palliative care populations in Kenya, Uganda and South Africa using FACIT-G+Pal and POS measures.ResultsAmong 461 participants across all countries, subscale “social and family wellbeing” had highest (best) score. Significant country effect showed lower (worse) scores for Uganda on 3 FACIT G subscales: Physical, Social + family, and functional. In multiple regression, country and functional status accounted for 21% variance in FACIT-Pal. Worsening functional status was associated with poorer POS score. Kenyans had worse POS score, followed by Uganda and South Africa. Matrix of correlational coefficients revealed moderate correlation between the POS and FACIT-Pal core scale (0.60), the FACIT-G and POS (0.64), and FACIT-G + Pal with POS (0.66).ConclusionsThe data reveal best status for family and social wellbeing, which may reflect the sample being from less individualistic societies. The tools appear to measure different constructs of wellbeing in palliative care, and reveal different levels of wellbeing between countries. Those with poorest physical function require greatest palliative and supportive care, and this does not appear to differ according to diagnosis.

Highlights

Despite the high mortality rates of HIV and cancer in sub-Saharan Africa, there are few outcome tools and no comparative data across conditions
The selection of patientreported outcome measures (PROMs) that are fit for purpose and reflect patient concerns is essential in promoting quality and equity [19]
There are currently few outcome measurement tools that are fit for purpose in African palliative care populations, i.e. tools that reflect the domains relevant to patients in Africa with progressive disease in line with the World Health Organization (WHO) definition of palliative care [20], and which have been subjected to local validation

Summary

Introduction

Despite the high mortality rates of HIV and cancer in sub-Saharan Africa, there are few outcome tools and no comparative data across conditions. Due to the challenges of opioid prescribing and availability in Africa, the palliative care research agenda has been dominated by the study of pain and analgesia [11,12,13,14,15,16], with less evidence of the needs that constitute the patient holistic experience of illness This is especially important in developing patient-centred care, as previous studies of patients with advanced disease in sub-Saharan Africa have highlighted the burden of symptoms, the need for information, and the importance attached to spiritual wellbeing [4,5,17,18]. It is currently unclear whether the available tools measure the same outcomes and underlying concepts

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