Introduction Consistent assessment of service quality is essential for driving improvements in care. This includes measures of effectiveness, rather than just process-related outcomes. The Outcome Assessment and Complexity Collaborative (OACC) in England and the Palliative Care Outcomes Collaboration (PCOC) in Australia are examples of successfully established patient-level core outcome sets for palliative care. In Wales, the Programme Board for Palliative and End-of-Life Care (PBPEoLC) is seeking a similarly standardised, consensus-driven approach appropriate for the value-based health and social care economy specific to Wales.
Aims To establish consensus on an effectiveness core outcome set (COS) for adult palliative care services appropriate for Wales.
Methods A consensus-driven multi-stage project, involving four stages. Stage I: Rapid review of existing literature to identify concepts used in the UK and internationally to assess palliative care service quality. Stage II: Expert group workshop to refine this longlist. Stage III: Wales-wide stakeholder online survey to rank importance for all outcomes from Stage II. Stage IV: Expert meeting to finalise and ratify the final COS and discuss next steps for implementation.
Results The four-stage approach resulted in a COS that consists of 21 outcomes, grouped into 6 domains: 1) physical, 2) psychological, 3) social and 4) spiritual aspects of care as well as 5) overall wellbeing and 6) information and communication needs.
Conclusions This consensus-driven project delivered a manageable COS, refined to best reflect Wales’ needs. A mapping exercise and gap analysis will now establish which existing toolkits are most suitable to measure the COS to underpin implementation.
Impact The COS has been adopted in full by the new Programme Board for End-of-Life Care in Wales and will sit alongside other measures of service quality (e.g. efficiency, safety), accessible both locally for palliative care teams to support service planning and bench-marking, and nationally for policy and strategy judgements.
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