Outcome measures from international older adult care home intervention research: a scoping review.

BACKGROUND: Care homes are increasingly important settings for intervention research to enhance evidence-informed care. For such research to demonstrate effectiveness, it is essential that measures are appropriate for the population, setting and practice contexts. OBJECTIVE: To identify care home intervention studies and describe the resident outcome measures used. DESIGN: Scoping review. METHODS: We reviewed international care home research published from 2015 to August 2022. We searched MEDLINE, EMBASE, CINAHL and ASSIA. We included any intervention study conducted in a care home, reporting resident outcomes. We extracted resident outcome measures, organised these using the domains of an adapted framework and described their use. RESULTS: From 7,330 records screened, we included 396 datasets reported in 436 publications. These included 12,167 care homes and 836,842 residents, with an average of 80 residents per study. The studies evaluated 859 unique resident outcomes 2,030 times using 732 outcome measures. Outcomes were evaluated between 1 and 112 times, with 75.1% of outcomes evaluated only once. Outcome measures were used 1-120 times, with 68.4% of measures used only once. Only 14 measures were used ≥20 times. Functional status, mood & behaviour and medications were the commonest outcome domains assessed. More than half of outcomes were assessed using scales, with a fifth using existing records or administrative data. CONCLUSIONS: There is significant heterogeneity in the choice and assessment of outcomes for intervention research in care homes. There is an urgent need to develop a consensus on useful and sensitive tools for care homes, working with residents, families and friends and staff.

Developing a minimum data set for older adult care homes in the UK: exploring the concept and defining early core principles.

Reforms to social care in response to the COVID-19 pandemic, in the UK and internationally, place data at the heart of proposed innovations and solutions. The principles are not well established of what constitutes core, or minimum, data to support care home residents. Often, what is included privileges data on resident health over day-to-day care priorities and quality of life. This Personal View argues for evidence-based principles on which to base the development of a UK minimum data set (MDS) for care homes. Co-produced work involving care home staff and older people working with stakeholders is required to define and agree the format, content, structure, and operationalisation of the MDS. Implementation decisions will determine the success of the MDS, affecting aspects including data quality, completeness, and usability. Care home staff who collect the data need to benefit from the MDS and see value in their contribution, and residents must derive benefit from data collection and synthesis.

Social care-related quality of life of people with dementia and their carers in England.

People with dementia and their carers are a growing subgroup of people who use community-based social care. These services are designed to maintain people's quality of life while living at home. The ASCOT measure of social care-related quality of life (SCRQoL), designed to evaluate quality and effectiveness of social care, has been adapted for proxy-report when someone is unable to self-report. The ASCOT-Carer has been developed to measure carer's own SCRQoL. This study sought to establish the factors related to SCRQoL of people living with dementia (PLWD, proxy-reported by carers) and their carers. Data were collected via a self-administered postal or online survey of 313 carers in England, from January 2020 to April 2021. Carers were eligible if they supported someone living with dementia at home, who was unable to self-complete questionnaires. The person living with dementia or their carer had to use at least one social care service, e.g. home care. We recruited participants via an online volunteer panel and NHS sites. Multiple regression was applied to explore the factors significantly related to ASCOT SCRQoL by self- and proxy-report. Key influences on carers' own SCRQoL were their health, financial difficulties associated with caring, and satisfaction with social care support. Inadequate home design was significantly negatively associated with SCRQoL for PLWD. The latter stages of the pandemic-related restrictions (the tier system from 2nd December 2020 to study end, April 2021) were associated with significantly worse SCRQoL for PLWD, but not for carers. The study offers insight into the factors associated with SCRQoL. In particular, the findings highlight the importance of adequate home design for people with dementia; satisfactory social care support and limiting any adverse financial impact of caring are important for carers. The findings indicate a negative effect of COVID restrictions on SCRQoL of people with dementia.