Measuring patient and family outcomes in palliative care in Africa
When we conducted a review of the status of palliative care in Africa a few years ago, we found that while there was a huge amount of progress and expertise on the ground, there was very little evidence that could persuade policy makers and funders, and influence clinical practice (Harding & Higginson, 2005).
One of the many reasons for this was that there were no measures that had been developed for Africa - measures that reflect the priorities of African patients, families, clinicians, and that had been tested among them to ensure that they performed reliably, and were appropriate for the diseases faced in the continent.
A first question was whether this work was needed; and it was very clear that African practitioners wanted such a tool (Harding et al, 2003) and furthermore thought that it should be simple and practical to use in the workplace (Harding et al, 2007).
In collaboration with partners we developed a proposed tool (The APCA African Palliative Outcome Scale [POS]) that was initially piloted in 12 sites across 8 countries. Subsequently, we began the ENCOMPASS project (Ensuring Core Outcomes and Measuring Palliation in Sub-Saharan Africa) with support from the UK’s BIG Lottery Fund. Our partners are Hospice Africa Uganda, University of Cape Town / St Lukes, University of KwaZulu Natal / Philanjalo, South Coast Hospice, and Wits Palliative Care. Having employed the first research palliative care nurses in Africa, they went on to do two major things.
Firstly, they validated the APCA African POS, which means that services can now use the 10-item POS in the knowledge that it works scientifically in a range of settings. Secondly, they undertook a full clinical audit cycle, which means that they followed patients under their care, came together and looked at what they did well and what they might improve, worked with their clinical team to decide how best to address those improvements, then followed patients up again to see if they had achieved the change they wanted. The strength of this approach is that it is a process led by your care centre: you decide what you want to achieve and work together in your care facility to improve outcomes for patients and families.
The feedback on the APCA African POS from the doctors and nurses who have used it has been very supportive (Powell et al, 2007); it is seen as easy to use and helps clinicians to do holistic assessment and to raise difficult issues.
The APCA African POS is not the only tool in use in Africa. Indeed, the MISSOULA VITAS has also been validated in Uganda, and some symptom tools (such as the MSAS-SF) have been used by us successfully, while the FACT-G has been translated into a number of African languages.
The important step forward is that not only can we claim that palliative care is being rolled out in recent years, we can now ensure that African patients and families can receive high quality palliative care and have the means to improve the care given by working as a team. In richer countries, care is often evaluated and ‘evidence-based’ - Africans deserve no less. We hope that the APCA African POS can play a role in measuring and delivering that quality.
References
Harding R, Dinat N, Mpanga-Sebuyira L. Measuring and improving palliative care in South Africa: Multi-professional clinical perspectives on development and application of appropriate outcome tools. Progress in Palliative Care, 15: 55-59
Harding R & Higginson IJ (2005) Palliative care in Sub-Saharan Africa. The Lancet, 365: 1971-77
Harding R, Stewart K, Marconi K, O'Neill JF & Higginson IJ (2003) Current HIV/AIDS end-of-life care in sub-Saharan Africa: A survey of models, services, challenges and priorities. BMC Public Health, 3: 33
Powell RA, Downing J, Harding R, Mwangi-Powell F & Connor S on behalf of the APCA M&E Group (2007) Development of the APCA African Palliative Outcome Scale. Journal of Pain and Symptom Management, 33: 229-232
Author
Dr Richard Harding, Senior Lecturer
Contact: Richard Harding
Postal address: Department of Palliative Care, Policy and Rehabilitation King's College London School of Medicine at Guy's King's & St Thomas' School of Medicine, Weston Education Centre, Cutcombe Road, London, SE5 9PJ, England
Email: richard.harding@kcl.ac.uk