A review of recommended outcomes and measurement tools within Core Outcome Sets (COS) developed for dementia

Background

A core outcome set (COS) is a minimum set of health outcomes to be measured for a given condition. COS can be developed for specific populations, interventions, or settings, so several COS may exist for a condition e.g., dementia. Comparison of the outcomes and measurement tools informs which outcomes should be considered by stakeholders when assessing quality of care.

Method

COS developed for people living with any type of dementia were identified through the COMET database¹ and handsearching references of eligible papers. Data was extracted on COS scope (population, intervention), stakeholders, development methods, and the outcomes and tools recommended within each COS. Recommended outcomes were classified against COMET’s taxonomy² and tools were grouped by outcome across COS.

Result

Ten papers outlining 14 COS were identified (Table 1). Nine included people living with dementia, carers or care organisations in the consensus process. Eleven specified use for a disease stage or intervention. Eleven COS were for research use, one for routine care, and two for both settings. 87 outcomes covering a range of domains were recommended (Table 2). Function/Activities of Daily Living, Cognition, Patient behaviour/ neuropsychiatric symptoms, QoL, and Family Carer QoL were all recommended by at least four COS. Eight COS included recommendations of how to measure the outcomes, but tools differed across the COS.

Conclusion

Multiple COS for dementia have been identified. Most of these have been developed for research, specific interventions, or stages of dementia. Although the majority involved people with dementia or their carers, further quality assessment is needed. Evaluation of recommended outcomes and quality of COS development is required where multiple COS exist, or COS scope does not directly match the proposed area of application. This information can be used by stakeholders from the intended setting to select or ratify the most pertinent outcomes instead of creating additional COS.

¹ https://www.comet‐initiative.org/

²Dodd S et al. A taxonomy has been developed for outcomes in medical research to help improve knowledge discovery. J Clin Epidemiol. 2018;96:84‐92.