Understanding the Outcomes of Supplementary Support Services in Palliative Care for Older People. A Scoping Review and Mapping Exercise.

CONTEXT: Supplementary support services in palliative care for older people are increasingly common, but with no recommended tools to measure outcomes, nor reviews synthesising anticipated outcomes. Common clinically focussed tools may be less appropriate.

OBJECTIVE: To identify stakeholder perceptions of key outcomes from supplementary palliative care support services, then map these onto outcome measurement tools to assess relevance and item redundancy.

METHODS: A scoping review using Arksey and O'Malley's design. EMBASE, CINAHL, MEDLINE and PSYCHinfo searched using terms relating to palliative care, qualitative research and supplementary support interventions. Papers imported into Endnote™, and Covidence™ used by two reviewers to assess against inclusion criteria. Included papers were imported into NVivo™, and thematically coded to identify key concepts underpinning outcomes. Each item within contender outcome measurement tools was assessed against each concept.

RESULTS: 60 included papers focused on advance care planning, guided conversations, and volunteer befriending services. Four concepts were identified: enriching relationships; greater autonomy and perceived control; knowing more; and improved mental health. Mapping concepts to contender tool items revealed issues of relevance and redundancy. Some tools had no redundant items, but mapped only to two of four outcome themes, others mapped to all concepts, but with many redundant questions. Tools such as ICECAP-SCM and McGill Quality of Life had high relevance and low redundancy.

CONCLUSIONS: Pertinent outcome concepts for these services and population are not well represented in commonly used outcome measurement tools, and this may have implications in appropriately measuring outcomes. This review and mapping method may have utility in fields where selecting appropriate outcome tools can be challenging.