A core outcome set for nonpharmacological health and social care community-based interventions for people living with dementia

Harding, Andrew and Morbey, Hazel and Ahmed, Faraz and Opdebeeck, Carol and Williamson, Paula and Swarbrick, Caroline and Leroi, Iracema and Challis, David and Davies, Linda and Reeves, David and Holland, Fiona and Hann, Mark and Hellström, Ingrid and Hydén, Lars-Christer and Burns, Alistair and Keady, John and Reilly, Siobhan Theresa (2019) A core outcome set for nonpharmacological health and social care community-based interventions for people living with dementia. Journal of Evidence-Based Medicine, 21 (S1): P6. p. 8.

Abstract

Currently there i s a lack of consistency in outcomes measured across studies evaluating nonpharmacological health and social care community-based interventions for people living with dementia, which obstructs comparisons for effectiveness and makes the interpretation of results and meta analysis difficult. One way to address this is to use and report a core outcome set—a list of core outcomes that should be measured and reported as a minimum across all relevant effectiveness trials. In phase 1, outcomes were extracted from existing trials (n = 124) and key stakeholders (people living with dementia, care partners, and health and social care professionals; policymakers and researchers) were recruited to interviews and focus groups (n = 55) in order to identify important outcomes. On the back of unsuccessful attempts elsewhere at involving people living with dementia in a Delphi survey, in phase 2 the research team facilitated substantial involvement of people living with dementia as co-researchers in order to design a modified, accessible, and innovative two-round Delphi survey method. Across the stakeholder groups, the excellent response rate in the Delphi (86.3% response rate between rounds—R1 n = 285; R2 n = 246) reflects the substantive work undertaken to ensure the method was accessible to people living with dementia. The final core outcome set was ratified at a consensus meeting (again, modified to accommodate people living with dementia), where 13 outcomes were finalized as core. The next phase of the study will undertake a systematic review to assess how outcomes should be measured.