Measuring and improving palliative care in South Africa: multiprofessional clinical perspectives on development and application of appropriate outcome tools

摘要

Background: Despite innovation and expanding coverage of specialist palliative care provision in South Africa, there have been no multidimensional outcome measures to inform patient monitoring, service evaluation or quality audit. Aim: To identify South African palliative care providers' recommendations on the design, development and utilisation of multidimensional palliative care outcome measures appropriate for the epidemiology and delivery settings for advanced disease in South Africa.Methods: South African palliative care professionals participated in a review of outcome measurement and current use. Participants addressed the objectives of appraising current practice and setting priorities for the development and application of feasible, acceptable and appropriate outcome measures within the African context.Results: None of the 32 multiprofessional palliative care participants were currently using a multidimensional palliative care scale. Current practice for monitoring outcomes relied on the use of unvalidated scales, longhand note taking, and use of clinicians' recall of previous health status. Recommendations for future measures included selecting items that take account of the family burden of disease, the differences between HIV and cancer patient trajectories, and the paediatric burden of advanced disease in South Africa. Adequate resources should be allocated to staff training to familiarise them with measure use, service infrastructure to be able to utilise outcome data, and ensuring acceptability and appropriateness among patients and families in terms of language, translation and identifying mechanisms to standardise data collection.Conclusions: Recommendations have been generated from the data, addressing: (i) service enablement for applied and translational research; (ii) validation within South Africa; (iii) development of tools equally applicable to HIV and cancer but separate tools for children; (iv) inclusion of family domains; and (v) support for staff to implement tools. The design of multidimensional outcome measures using this guidance is timely to evaluate and inform current practice, and to guide future funding and service development.