The development of the APCA African palliative care outcome scale (POS) as an M&E tool for palliative care in Africa
Funded by the National Hospice and Palliative Care Organisation (NHPCO) , Washington, USA, this study was conducted in collaboration with the NHPCO's Dr Stephen Connor, and Dr Richard Harding and the Department of Palliative Care and Policy, Kings College London, England.
Background
The current need for effective quality palliative care across Africa has never been greater. However, measuring the palliative care offered by service providers in Africa as part of an M&E strategy orientated towards continuous quality improvement is problematic in the absence of rigorously validated instruments.
Aim
This study therefore sought to develop a simple and brief multidimensional outcome measure for palliative care using patient-level indicators in order to begin to address the issue of how to monitor and evaluate palliative care provision across the continent.
Method
The World Health Organisation's definition of palliative care was adopted, with five key domains of palliative care selected for measurement. An initial set of patient-level indicators was revised to a final list of ten indicators following an alpha pilot in 4 sites across 3 countries, and a beta pilot in 11 sites across 8 countries. 20 patients in each site were assessed by service staff using the patient-level indicators on 4 consecutive visits.
Results
Initial results obtained from 4 sites (n=80) identified high baseline needs in most areas (e.g. pain; symptoms; patient worry; and the families' need for advice). Low baseline needs were seen in the areas of access to medicine and whether the patient felt able to share their feelings. The indicators showed sensitivity to change over time, with statistically significant improvement detected over the four visits in all areas apart from those with low baseline need levels (p<0.001 for 9 questions, p<0.05 for two questions using the Wilcoxon paired test). This is important if the patient-level indicators are to be used in an M&E / clinical audit capacity.
Discussion
The development of the APCA African POS is an important step forward in Africa in the development of M&E tools for measuring palliative care that can inform the ongoing process of continuous quality service improvement. Initial evidence suggests that the use of the APCA African POS assists nurses in assessing and caring for individual patients. The tool was easy to use and highly valued in daily practice. The APCA African POS is currently undergoing final validation and is also being piloted in a non-specialist palliative care setting.