Title: Developing consensus on a core outcomes set for adult specialist palliative care in Wales
Funder: Marie Curie

Abstract: Assessment of care delivery is essential for managing service performance and driving improvements in care. However Traditionally palliative care metrics have demonstrated service activity rather than the impact of services on patient/family outcomes. There is increasing emphasis and international consensus on the need for outcome measures which demonstrate the quality and effectiveness of palliative care. In Wales, the End of Life Care Board (EoLB) has prioritised the establishment of a standardised approach to the collection of such data. Several national/international initiatives have successfully implemented standardised outcome measurement systems at local level which allow national/international benchmarking. Focused on domains for adult palliative care, with an emphasis on specialist palliative care services, this project will refine Wales position on the domains and tools identified through the work undertaken internationally, and gain consensus on which domains and mechanisms of capture best reflect Wales needs. A multi-phased approach will achieve the project ambitions. Results of a rapid review of literature including international guidelines on SPC outcome measurement and evidence from implementation initiatives will form the basis for discussion at two stakeholder events (online). A modified Nominal Group Technique will facilitate Wales-wide consensus on the need for an outcome set/consistent impact measurement; which existing outcome domains meet this need; gaps in outcome domains; timepoints of measurement; and if existing initiatives/specifications adequately assess the domains of interest to Wales. Voting on domains and timepoints will be appointed ranked mean weightings. The rationales and narratives will be recorded, transcribed and thematically analysed. The results report will underpin the EOLBs judgement on a future outcome measurement dataset for Wales. Recommendations on key tasks/phases for the board’s consideration will fuel momentum towards implementation of a measurement framework that supports service improvement and quality care through inclusion in the End of Life Care Delivery Plan and Quality Statement for Wales.

Lay abstract: What is specialist palliative care? Specialist palliative care supports people with progressive, non-curable illnesses, and their families. The focus of care is on quality of life and supporting complex needs which may be physical, psychological, social, or spiritual. Care is delivered by trained professionals who specialise in supporting people at end of life. This includes specialist advice, support, and symptom management that generalist care teams may not be able to provide in a timely way. Care is delivered in a range of settings including hospitals, hospices, homes, and care homes1. What is the project trying to do? Service outcomes are the things a service aims to achieve, the expected results or intended benefits for service users. This project aims to get agreement on a list of outcomes for adult specialist palliative care in Wales, how to measure the outcomes, and how often. How will we go about it? We will find out what guidelines and evidence exist by conducting a literature review. The findings will form the basis of discussions at two online events where people with a professional or personal interest in the topic will reach agreement on the most important and relevant specialist palliative care outcome measures for the people of Wales. Who will be involved? Public and patient representatives, frontline clinical staff, policy makers, NHS and third sector service managers from across Wales. What will be achieved? We will have Wales-wide agreement on the common aims of specialist palliative care services. The results report will be shared with the End of Life Care Board, Local Health Boards, and Welsh Government to influence the development of a new, more outcomes focused, End of Life Care Delivery Plan and Quality Statement. This will support continuous service improvement and provision of high-quality care for the people of Wales.

Research activity codes: 7.2 END OF LIFE CARE;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE