Introduction
Routine standardised data collections from older adults resident in care homes are conducted in some countries: for example, data are collected using Minimum Data Set (MDS) 3.0 in the US [
1,
2] and the International Resident Assessment Instrument (InterRAI) in various countries [
3]. These resident-level data collections, known as minimum data sets (MDS), are used for a range of purposes, from direct care to analysis that informs policy, planning, funding and delivery of services. In the UK, however, there is currently no systematic routine collection of data in a centralised, aggregated form. Instead, there are various separate health and social care data collections held in different formats, by different agencies. A current UK policy aim is to move towards greater standardisation, wider adoption of digital data collection, and linkage of individual-level data to maximise use [
4].
In this context, the Developing resources And minimum data set for Care Homes' Adoption (DACHA) study is a programme of research to develop and test the feasibility of a resident-level UK MDS [
5,
6]. One DACHA project work package was an individual-level pilot data collection from older adult care homes in England, via digital care records and linked data [
5]. This drew on data collected in routine inpractice by participating homes, as well as from additional measures added by software providers, and completed by care home staff. These included resident-level quality of life (QoL), since QoL was a priority for inclusion in the MDS to reflect residents’ and families’ priorities [
6] and to address the critique that existing MDS focus too narrowly on clinical, health and functioning data [
2,
6]. Following consultation with stakeholders [
7], five QoL measures were selected: EQ-5D-5L Proxy 2 [
8], QUALIDEM [
9,
10], ICECAP-O [
11,
12], QoL item (5-point scale), and the two QoL measures from the Adult Social Care Outcomes Toolkit for proxy completion (ASCOT-Proxy) [
13]. This paper focuses on the two ASCOT-Proxy measures and, specifically, their structural validity,
1 since the measures have been relatively recently developed and DACHA was the first data collection from care staff on behalf of residents. The psychometric properties of the other individual-level QoL measures in DACHA, as well as construct validity by hypothesis testing of the ASCOT-Proxy measures, are reported elsewhere.
ASCOT-Proxy is a questionnaire that collects data for two separate measures of social care-related QoL (SCRQoL) (see
www.pssru.ac.uk). It was developed and adapted from ASCOT-SCT4, a self-report measure of SCRQoL that was originally designed for older adults living at home [
15]. ASCOT-SCT4 has been found to be valid and reliable for adults of all ages, with a range of support needs [
16], translated into various languages [
17‐
19], and adapted for mixed-methods data collection in care homes (CH4) [
20,
21]. In care homes, data collection using ASCOT-SCT4 is often not feasible. An estimated 70% of UK care home residents have dementia [
22] and many are unable to self-report QoL, even with flexible methods. The CH4 (another adapted version of ASCOT-SCT4) may also not always be feasible since its data collection method is resource-intensive [
20]. This is why the ASCOT-Proxy was developed, with family carers and care workers, to enable data collection for people unable to self-report [
13,
23]. Proxy respondents are asked to rate the ASCOT-Proxy items from the
proxy-person perspective (i.e. what the proxy thinks the person thinks) and
proxy-proxy perspective (i.e. what the proxy thinks about the person’s QoL). These ratings generate the two measures of proxy-report SCRQoL: ASCOT-Proxy-Resident and ASCOT-Proxy-Proxy.
The DACHA study was the first data collection of ASCOT-Proxy from care home residents. The study used staff proxy report, since a previous study found that data collection from family proxies with the CH4 led to high levels of missing data, whereas staff report gave a more complete data [
20]. Previous studies of proxy report of QoL provide evidence of differences, albeit small, in rating by proxy ‘type’ (e.g., staff vs. family) [
24], so a consistent approach to proxy report by direct care staff, who knew the resident well, was adopted. Since ASCOT-proxy was developed [
13], there has been one study of its psychometric properties, in a sample of family carers of community-dwelling people with dementia [
25]. This study found that one measure, ASCOT-Proxy-Person (Resident), had acceptable properties; however, the other measure, ASCOT-Proxy-Proxy, did not fit to the expected unidimensional scale based on the single factor structure of the original ASCOT-SCT4 [
15]; instead, it was found to have a two-factor structure [
25]. There were also issues with the rating scale for two QoL domains (
Food and drink and
Personal comfort and cleanliness), which warranted further investigation [
25]. Due to these findings, especially since they were based on family carer proxy-report for people with dementia living at home, there is a need for further evaluation of the measure, in general, and also for proxy report by care home staff, as in the DACHA study [
5].
Therefore, the aim of this analysis was to evaluate the structural validity of the ASCOT-Proxy measures, as collected in the DACHA study by care home staff, using exploratory factor analysis and Rasch analysis. This forms part of the process of deciding whether and how to recommend the measure’s inclusion in a MDS, alongside evaluation of other psychometric properties (e.g., construct validity by hypothesis testing) and acceptability to care staff, which are reported elsewhere. Evaluation of ASCOT-Proxy’s structural validity, as well as other psychometric properties, is also important for guiding its future development and use in routine data collection, evaluation and research. This paper will inform the understanding of the collection of SCRQoL by care home staff proxies using ASCOT-Proxy, with comparison to the ASCOT-SCT4, also collected from care home staff proxies.
Discussion
This analysis aimed to establish the structural validity of ASCOT-Proxy when completed by care home staff on behalf of older care home residents. Whilst ASCOT-SCT4 is thought to have a single factor structure based on previous studies (e.g., [
15,
49]), this has not previously been assessed by care home staff report on behalf of older adults. On that basis, we also considered the structural validity of ASCOT-SCT4 collected in the ASCS by staff proxy report. We found that the single factor structure of the original ASCOT-SCT4 was replicated in this analysis. Therefore, we also expected to observe a single factor structure in the two measures of the ASCOT-Proxy collected in the DACHA study, an adapted version of the SCT4 for proxy-report. However, we found that only the ASCOT-Proxy-Resident had a single factor structure using EFA, whereas the ASCOT-Proxy-Proxy had a two-factor solution. The finding that the ASCOT-Proxy only forms a single factor solution for ASCOT-Proxy-Resident, not ASCOT-Proxy-Proxy, aligns to the first validation study of ASCOT-Proxy, conducted with data collected from family carers of community-dwelling adults with dementia [
25]. The main difference between this previous study and the analysis presented here is that
Dignity loads onto the higher-order factor for ASCOT-Proxy-Proxy and onto the single factor for ASCOT-Proxy-Resident with a loading > 0.4; it did not in the previous study [
25]. This finding supports the retention of the
Dignity item in the ASCOT-Proxy, which is part of the ASCOT-SCT4 (from which ASCOT-Proxy was developed) and was found to be conceptually important in its early development and testing [
15].
In addition, aligning with the previous study [
25], we recommend that, although both ASCOT-Proxy perspectives may be used to collect data, especially since qualitative evidence indicates that the dual proxy-proxy and proxy-resident perspective ratings enhance the measure’s acceptability [
13], only the ASCOT-Proxy-Resident ought to be used in analysis of residents’ SCRQoL. This is because the ASCOT-Proxy-Resident maintains the structure of the original ASCOT-SCT4, with a single factor related to social care-related QoL (see [
15] and analysis in this paper), whereas the eight ASCOT-Proxy-Proxy items form two separate measures. In addition, conceptually, the ASCOT-Proxy-Resident aligns more closely with the intended construct and purpose of ASCOT, as a measure of SCRQoL from a person-centred perspective and based on Sen’s capability approach [
15,
50], since it invites a person-centred perspective in QoL rating by the proxy respondent. Using the ASCOT-Proxy is also preferable to the SCT4, without adaptation, for proxy-report, since it gives clearer indication that it is designed and intended for proxy-report, and has been found to be more acceptable and feasible for completion by both family carer and care staff proxy respondents [
13,
23,
24].
The Rasch analysis indicated that there was acceptable model fit for ASCOT-Proxy-Resident with good internal consistency, overall model fit and item fit (as also, for ASCOT-SCT4 as a comparator). However, there was evidence of less than optimal distinguishability at the thresholds between outcome states, especially between some and high-level needs, for multiple items in both—SCT4 and—Proxy-Resident measures. There was also evidence of disordered thresholds, which appeared to be related to low frequency of selecting high-level needs. In applying psychometric approaches, it would usually be recommended to review these items to adjust item wording or response states to make it easier to choose the lowest QoL option or add new items. However, this study is a validation of an adapted version (ASCOT-Proxy) of an established measure (ASCOT-SCT4), with analysis of data collected in the same context (i.e., older adult care homes, by staff proxy) as a comparator. Therefore, rather than suggest further adaptations to either measure, we note these issues, especially the low frequency of selecting high-level needs, and set out our rationale for doing so, below.
ASCOT-SCT4 measure was designed as a preference-based measure for economic evaluation of social care interventions, service delivery and policy, although it is also used in other ways, e.g., assessment and care planning [
51,
52]. The four-level response states are important as they enable the rating of QoL now and also, ‘what could be’ if services were no longer available (counterfactual). This allows the application of a counterfactual self-estimation method using an interview version, ASCOT-INT4, to estimate the impact of social care on quality of life [
53]. The English context is covered by legislation, the Care Act (2014), which places a legal duty on local authorities to respond to adults’ eligible care needs. This welfare safety net means that it is uncommon for high-level needs to remain unmet. It is important, however, for the option of high-level needs to remain in the ASCOT measures to be able to identify the counterfactual (i.e., what it would be like if the system were no longer there and needs went unmet). The full range of ratings (ideal state to high-level needs) is also intended to allow measurement of trends, over time or by region, area or service, in long-term care systems that indicate stress-related failure or reduced performance. Therefore, we propose to keep the four response levels, despite the issue with low frequency of selection of high-level needs in this study, since it is part of the conceptual basis and design of ASCOT, and has also been observed with ASCOT SCRQoL collected by self-report (SCT4) or mixed-methods (CH4) [
15,
16,
20], which indicates it is unlikely to be (at least, primarily) due to proxy report bias and is part of the intended concept/construct of ASCOT.
The study had a number of limitations. First, due to the high % missing data for demographics (e.g., sex—see Table
1) in DACHA, since the study drew on data inputted by care home staff as part of routine care, we were not able to consider differential item functioning. This ought to be considered in future studies, with more complete demographic data. Second, the secondary data from the ASCS survey, only had very limited data on proxy report (i.e., whether the proxy was care staff or someone else—family or friend). The DACHA study applied consistent guidelines that measures ought to be completed by direct care staff, who knew the person well, but detailed demographic or role-related data was not collected. Therefore, future studies may usefully consider the impact (if any) of these characteristics on the measures’ psychometric properties. This is important as previous studies have found some effect of the type of proxy (staff, family) and also characteristics of the proxy, especially how well they know the person [
24]. Finally, it would have been interesting to directly compare ASCOT-Proxy and ASCOT-SCT4 (by proxy and self-report, where possible, although it is likely that many residents will not be able to self-report [
20]) collected from the same care home residents, with the same proxy respondents. This was not possible in this study, due to the limitations of the data collection, which is why we applied the ASCOT-SCT4 collected from a comparable population (care home residents) and by the same approach (care home staff proxy).
Despite these limitations, the analysis provides evidence of the structural validity of ASCOT-Proxy-Resident completed by care home staff and indicates directions for future research. Since this analysis only reports one aspect of ASCOT-Proxy’s psychometrics (i.e., structural validity), further investigation is needed, and is planned with the DACHA study, to consider other measurement properties, e.g., internal reliability, construct validity by hypothesis testing. ASCOT-Proxy-Proxy does not retain the single factor structure of the original ASCOT-SCT4, which replicates a recent study of proxy report by family carers [
25]. On the basis of these two studies, we do not recommend ASCOT-Proxy-Proxy’s use as a proxy-report measure of ASCOT SCRQoL, as it does not form a unidimensional scale of SCRQoL. However, we recommend that ASCOT-Proxy-Proxy data still be collected alongside ASCOT-Proxy-Resident, using the current ASCOT-Proxy questionnaire format (see Fig.
1), to enhance feasibility and acceptability of ASCOT-Proxy data collection and to give insight into whether, and how, ratings differ between proxy perspectives by item [
13]. Qualitative evidence of the feasibility and acceptability of ASCOT-Proxy data collection, specifically with care home staff, would give further insight into the best approach to data collection or further adaptation of the questionnaire for this context.
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