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30 Consensus and consistency: development of a core outcome set for evaluating bereavement support in palliative care
  1. Mirella Longo1,
  2. Hannah Scott1,
  3. Kathy Seddon2,
  4. Jim Fitzgibbon2,
  5. Fiona Morgan1,3,
  6. Sara Pickett4,
  7. Anthony Byrne1,
  8. Stephanie Sivell1,
  9. Annmarie Nelson1 and
  10. Emily Harrop1
  1. 1Marie Curie Palliative Care Research Centre, Cardiff University, UK
  2. 2Patient and Public Representative, UK
  3. 3Specialist Unit for Review Evidence, Cardiff University, UK
  4. 4Swansea Centre for Health Economics, Swansea University, UK


Background Palliative care has an established role in the provision of bereavement support. However the research evidence is limited and a lack of consistency in the outcomes used to evaluate services makes it difficult to draw conclusions on their relative effectiveness. Core Outcome Sets (COS) represent the ‘minimum that should be measured and reported’ in research into specific conditions or services making it easier to compare evaluation results [].

Aim To develop a COS for evaluating bereavement support in palliative care for adults who have lost adults through terminal illness.

Methodology Four stages were used to identify agreement on the core outcome Set. Stage 1) a systematic review of qualitative and quantitative papers. Stage 2) a first consensus day of 21 people with expertise in bereavement support (including: adults with bereavement experience providers of bereavement support services researchers) who discussed and amended the outcomes emerging from the review of the literature. Stage 3) a two-round DELPHI survey of 238 bereavement experts. Stage 4) a second consensus day of 23 experts who discussed and reached agreement on the ranking of outcome measures emerging form the DELPHI survey.

Results Preliminary analysis of the consensus days and survey results suggest that the most important outcomes to use are ‘ability to cope’ and ‘mental health and wellbeing’. Core dimensions to explore when assessing these outcomes have also been identified.

Conclusion Available validated tools are being reviewed for their suitability. Gaps will be highlighted with further work planned to adapt or develop measures as necessary.

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