Quality of life and wellbeing among HIV outpatients in East Africa: a multicentre observational study

High prevalence and associated burden of physical and psychological problems have been reported among HIV outpatients with access to antiretroviral therapy (ART) in high income countries [1]-[4]. Within the generalised epidemic of sub-Saharan Africa, evidence of patient-reported problems since the rollout of ART has mainly related to later stages of HIV disease [5],[6]. The World Health Organisation (WHO) definition of health is ‘complete physical, mental and social well-being’, [7] and WHO guidance also identifies the need for the assessment and management of physical, psychological, social and spiritual problems from the point of HIV diagnosis and alongside treatment [8].

Although global evidence suggests that patients bear a high burden of problems from the point of HIV diagnosis [9], clinical skills and research since the advent of ART have focused mainly on outcomes of viral suppression and delaying mortality, and arguably have lost patient-centredness [10]-[12]. Patient reported outcome measures (PROMS) have been identified as essential tools to promote quality and equity in healthcare [13]. An evaluation of the effect of PEPFAR (President’s Emergency Plan for AIDS Relief) funding in its target countries has established that there has been a decrease in HIV-related deaths [14] and a reduction in the number of HIV-positive births [15]. However, there has been a lack of evaluative evidence of the management of patients’ health from their own perspective; therefore it is unclear whether optimal benefit is being achieved from treatment investment.

This paper aims to measure patient wellbeing using PROMS among HIV outpatients at PEPFAR-funded facilities, and to determine associations with patient problems.

Our data reveal severe problems for patients’ access to help and advice and to their ability to share feelings. Generally, social and spiritual problems were self-reported as worse than physical problems. This suggests that the concept of health as defined by the WHO needs greater clinical attention. In the context of a generalised epidemic and limited resources, implying a high patient load per health professional, time may be limited for help and advice. Routine assessment of multi-dimensional problems and referral to non-medical/nursing staff may be a feasible approach to achieving wellbeing. Holistic assessment and care are required, especially as we found that those with worse physical and mental health reported poor wellbeing in terms of being at peace (a measure of spiritual wellbeing [25]), and gaining help and advice. It is also important to note that within the POS, the greatest proportion of respondents who identified severe problems were for the items on accessing help and advice, sharing feelings, and being at peace. Inequalities persist in terms of those with less education having a worse POS score (multidimensional problems) and worse mental health for the less wealthy, demonstrating that within the global health debate we must recognise inequalities within low income countries. The quantitative POS data are supported by qualitative data from these facilities, which identified the multidimensional problems of outpatients in line with the WHO definition of palliative care, i.e. problems in the physical, psychological, social and spiritual domains [26]. The data also demonstrate a higher burden of physical and mental ill-health, and multidimensional problems, with poorer functional status. Socioeconomic status and education are closely associated with each other, therefore only one or the other is associated with outcomes in multivariate models. We note from previous analysis of people newly diagnosed with HIV in East Africa that help/advice is closely associated with education (contributing significantly to the total POS score) [27], which may explain our finding of an association between education rather than poverty and total POS score.

An analysis of ART-na’ve HIV outpatients in Uganda found very similar MOS-HIV mean physical subscale score (46.18 vs 44.9 in our sample) and mental subscale score (46.19 vs 46.2) [28]. The MOS-HIV subscale mean scores in our sample are worse compared to recent data from Belgium (mean physical health subscale in Belgium 55.6 vs 44.9 in our sample, mean mental health 52.0 in Belgium vs 46.2 in our sample) [29] although a greater proportion of the sample in Belgium were male (78.9% vs 31.7% and on ART (92.0% vs 43.4%).

There are several limitations to our data. Firstly, the use of self-report data may be less robust in regions with limited literacy and less experience of questionnaire use. We reduced this potential bias by only using questionnaires validated on local populations, and by researchers administering all questionnaires. Second, clinical data (i.e. ART use and CD4 count) were reliant on availability on file, and therefore we were unable to analyse variables where this was not routinely collected and recorded. We have reported separate analyses of factors associated with the presence of a CD4 count on file [30]. Third, the data are cross sectional and therefore we can determine associations not causality.

It is notable that our findings confirm previous European evidence that ART use is not associated with physical or mental health [3]. We do not suggest that ART is not effective in improving outcomes, but that people on treatment continue to have multidimensional problems that require support across domains of need to achieve optimal health. We recently completed two trails of an intervention [31] in response to the findings in the present paper that these problems persist and are burdensome alongside treatment.

From these data we conclude that all patients require holistic assessment and care irrespective of ART use or functional status, but that those with worse function or with a lower socioeconomic status require additional support beyond the medical management of their HIV disease.