Abstract #293  -  What are the multidimensional palliative care needs of patients presenting for HIV outpatient care in East Africa: results from a multicentre international study
Authors:   Presenting Author:   Dr Richard Harding - King's College London
Additional Authors:  Ms Victoria Simms, Dr Suzanne Penfold, Professor Peter Fayers, Dr Julia Downing, Mr RA Powell, Dr Zipporah Ali, Dr Faith Mwangi-Powell, Ms Eve Namisango, Ms Grace Munene, Ms Clare Nsubuga, Mr Geoffrey Banga, Ms Jeniffer Kataike, Ms Mackuline Atieno, Ms Nancy Gikaara, Dr Scott Moreland, Professor Irene Higginson,
Aim: WHO clinical guidance stipulates multidimensional palliative care intervention from the point of HIV diagnosis through to the end of life. This should assess, and control, problems across physical, psychological, social and spiritual domains. This study aimed to measure these problems among patients presenting for care in East Africa.
Method / Issue: The study was conducted in 12 clinics across Kenya and Uganda. Consecutive adult patients were recruited if they had a known HIV diagnosis, had a new diagnosis or new presenting problem, were 18 years or older, and could give informed consent and complete the study tools. Local clinic staff were trained to administer the APCA African POS (the palliative outcome scale is a well-validated tool that measures self-reported outcomes across the core palliative care domains above during the previous 3 days). Each item scores on a range of 0-5. Patient demographic and clinical data were collected.
Results / Comments: 1336 people were recruited, between 102 to 125 from each facility. Participants were aged 18 to 70 (median 34) and 424 (32%) were male. Only a minority (241, 18%) were accompanied by a caregiver. In the three days prior to recruitment, 29% of participants reported the worst scores of severe, very severe or overwhelming pain; 16% experienced severe, very severe or overwhelming symptoms; 11% had been worried a lot, most, or all of the time; 28% had not been able to share their feelings with family or friends; 12% had never, or not very often, felt that life was worthwhile; 21% had never or not very often felt at peace; and 37% had received no help or advice for their family to plan for the future.
Discussion: This randomly selected sample of outpatients at all stages of HIV disease experienced a severe burden of multidimensional problems. Psychosocial problems were a particular concern with 28% unable to talk about how they felt at any time in the previous three days. Severe pain was common, affecting almost a third of patients. Alongside rollout of antiretroviral therapy, holistic palliative care is essential for the management of these problems and to improve quality of life. The needs of outpatients with access to antiretroviral therapy must be assessed and controlled, with generalist palliative care available by trained staff in all HIV care facilities and specialist palliative care referral centres available near by for those with apparently refractory problems. It is important to note that physical, psychological, spiritual and social problems persist as antiretroviral therapy is made more widely available.
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