National stakeholder consultation on how to measure care home residents' quality of life.

Abstract

The Developing research resources And minimum data set for Care Homes' Adoption and use or DACHA study aims to create a prototype minimum data set combining residents' information recorded by care homes with their data held in health and social care data sets. The DACHA minimum data set will contain information on quality of life. Internationally and in the UK, there is no consensus on collecting information on quality of life in a standardised format equivalent to the consensus for health measures. This paper describes an online consultation with stakeholder representatives about how to measure the quality of life of residents in UK older-adult care homes, for inclusion in the DACHA minimum data set. We drew on principles of the Delphi technique, identifying participants knowledgeable about living, working in and visiting care homes, and preference scoring. We used a bespoke online research engagement platform (Thiscovery, www.thiscovery.org, Cambridge, UK) to engage the participants. Participants included care home staff and managers, old age specialists (clinical/research), commissioners/providers/regulators, primary care professionals, relatives/family carers of care home residents. The consultation is complementary to DACHA's research and patient and public involvement and engagement activities, which have involved people living in care homes; thus, care home residents were not included in this consultation. The first round asked 30 participants to rank the most important principles and domains to consider when measuring quality of life in care homes. Responses to round 1 informed the selection of quality of life measures that round 2 (September 2022) participants were asked to report their familiarity with and confidence in a range of outcome measures all of which met the criteria identified as important in round 1. Recruitment was extended in round 2, and 72 individuals participated. Based on the rankings and the qualitative feedback in round 2, we included four of the shortlisted quality of life outcome measures in DACHA's prototype minimum data set for care homes. The qualitative feedback suggested a shared understanding across the different representative groups about the strengths and limitations of the selected measures. This work makes an important contribution, understanding the opportunities that quality of life measures pose for different stakeholder groups as regular users of care home resident data. In future DACHA work, interviews and focus groups will collect further data about the perceptions of care home staff who completed measures during the pilot study and about the usefulness of the data collected via these measures. The quality-of-life section of the DACHA minimum data set can contribute to informing similar care home data sets internationally. This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number NIHR127234.