Ann-Marie Towers

An assessment of the construct validity of the ASCOT measure of social care-related quality of life with older people

BackgroundThe adult social care outcomes toolkit (ASCOT) includes a preference-weighted measure of social care-related quality of life for use in economic evaluations. ASCOT has eight attributes: personal cleanliness and comfort, food and drink, control over daily life, personal safety, accommodation cleanliness and comfort, social participation and involvement, occupation and dignity. This paper aims to demonstrate the construct validity of the ASCOT attributes.MethodsA survey of older people receiving publicly-funded home care services was conducted by face-to-face interview in several sites across England. Additional data on variables hypothesised to be related and unrelated to each of the attributes were also collected. Relationships between these variables and the attributes were analysed through chi-squared tests and analysis of variance, as appropriate, to test the construct validity of each attribute.Results301 people were interviewed and approximately 10% of responses were given by a proxy respondent. Results suggest that each attribute captured the extent to which respondents exercised choice in how their outcomes were met. There was also evidence for the validity of the control over daily life, occupation, personal cleanliness and comfort, personal safety, accommodation cleanliness and comfort, and social participation and involvement attributes. There was less evidence regarding the validity of the food and drink and dignity attributes, but this may be a consequence of problems finding good data against which to validate these attributes, as well as problems with the distribution of the food and drink item.ConclusionsThis study provides some evidence for the construct validity of the ASCOT attributes and therefore support for ASCOTs use in economic evaluation. It also demonstrated the feasibility of its use among older people, although the need for proxy respondents in some situations suggests that developing a version that is suitable for proxies would be a useful future direction for this work. Validation of the instrument on a sample of younger social care users would also be useful.

The characteristics of residents in extra care housing and care homes in England

Extra care housing aims to meet the housing, care and support needs of older people, while helping them to maintain their independence in their own private accommodation. It has been viewed as a possible alternative, or even a replacement for residential care. In 2003, the Department of Health announced capital funding to support the development of extra care housing and made the receipt of funding conditional on participating in an evaluative study. This paper presents findings on the characteristics of the residents at the time of moving in, drawing on information collected from the 19 schemes in the evaluation, and a recent comparable study of residents who moved into care homes providing personal care. Overall, the people who moved into extra care were younger and much less physically and cognitively impaired than those who moved into care homes. However, the prevalence of the medical conditions examined was more similar for the two groups, and several of the schemes had a significant minority of residents with high levels of dependence on the Barthel Index of Activities of Daily Living. In contrast, levels of severe cognitive impairment were much lower in all schemes than the overall figure for residents of care homes, even among schemes designed specifically to provide for residents with dementia. The results suggest that, although extra care housing may be operating as an alternative to care homes for some individuals, it is providing for a wider population, who may be making a planned move rather than reacting to a crisis. While extra care supports residents with problems of cognitive functioning, most schemes appear to prefer residents to move in when they can become familiar with their new accommodation before the development of more severe cognitive impairment.

Deciding to move into extra care housing: residents’ views

ABSTRACT Extra care housing aims to meet the housing, care and support needs of older people, while helping them to maintain their independence in their own private accommodation. In 2003, the Department of Health announced capital funding to support the development of extra care housing, and made the receipt of funding conditional on participating in an evaluative study. Drawing on information collected directly from residents in 19 schemes, this paper presents findings on the factors motivating older people to move to extra care housing, their expectations of living in this new environment, and whether these differ for residents moving to the smaller schemes or larger retirement villages. In total, 949 people responded, 456 who had moved into the smaller schemes and 493 into the villages. Of the residents who moved into the villages most (75%) had not received a care assessment prior to moving in, and had no identified care need. There was evidence that residents with care needs were influenced as much by some of the attractions of their new living environment as those without care needs who moved to the retirement villages. The most important attractions of extra care housing for the vast majority of residents were: tenancy rights, flexible onsite care and support, security offered by the scheme and accessible living arrangements. The results suggest that, overall, residents with care needs seem to move proactively when independent living was proving difficult rather than when staying put is no longer an option. A residents level of dependency did not necessarily influence the importance attached to various push and/or pull factors. This is a more positive portrayal of residents’ reasons for moving to smaller schemes than in previous UK literature, although moves did also relate to residents’ increasing health and mobility problems. In comparison, type of tenure and availability of social/leisure facilities were more often identified as important by those without care needs in the villages. Therefore, as in other literature, the moves of village residents without care needs seemed to be planned ones mostly towards facilities and in anticipation of the need for care services in the future.

Using cost-effectiveness estimates from survey data to guide commissioning: an application to home care

The aim is to describe and trial a pragmatic method to produce estimates of the incremental cost-effectiveness of care services from survey data. The main challenge is in estimating the counterfactual; that is, what the patients quality of life would be if they did not receive that level of service. A production function method is presented, which seeks to distinguish the variation in care-related quality of life in the data that is due to service use as opposed to other factors. A problem is that relevant need factors also affect the amount of service used and therefore any missing factors could create endogeneity bias. Instrumental variable estimation can mitigate this problem. This method was applied to a survey of older people using home care as a proof of concept. In the analysis, we were able to estimate a quality-of-life production function using survey data with the expected form and robust estimation diagnostics. The practical advantages with this method are clear, but there are limitations. It is computationally complex, and there is a risk of misspecification and biased results, particularly with IV estimation. One strategy would be to use this method to produce preliminary estimates, with a full trial conducted thereafter, if indicated.

Dutch translation and cross-cultural validation of the Adult Social Care Outcomes Toolkit (ASCOT)

BackgroundThe Adult Social Care Outcomes Toolkit was developed to measure outcomes of social care in England. In this study, we translated the four level self-completion version (SCT-4) of the ASCOT for use in the Netherlands and performed a cross-cultural validation.MethodsThe ASCOT SCT-4 was translated into Dutch following international guidelines, including two forward and back translations. The resulting version was pilot tested among frail older adults using think-aloud interviews. Furthermore, using a subsample of the Dutch ACT-study, we investigated test-retest reliability and construct validity and compared response distributions with data from a comparable English study.ResultsThe pilot tests showed that translated items were in general understood as intended, that most items were reliable, and that the response distributions of the Dutch translation and associations with other measures were comparable to the original English version. Based on the results of the pilot tests, some small modifications and a revision of the Dignity items were proposed for the final translation, which were approved by the ASCOT development team. The complete original English version and the final Dutch translation can be obtained after registration on the ASCOT website (http://www.pssru.ac.uk/ascot).ConclusionsThis study provides preliminary evidence that the Dutch translation of the ASCOT is valid, reliable and comparable to the original English version. We recommend further research to confirm the validity of the modified Dutch ASCOT translation.

Why are relatives of care home residents reluctant to “rock the boat”? Is there a culture of acceptance?

Purpose The purpose of this paper is to explore whether relatives of care home residents are best placed to act as “champions” or advocates for their family members, as is often the expectation. Design/methodology/approach Focus groups and interviews were conducted with 25 relatives of residents in four care homes for older people in the South East of England. Two rounds of focus groups were held in each participating care home: the first was to discuss any issues arising from the care received, or concerns about the home itself; the second was to enable a deeper exploration of the key themes that arose from the first round and explore why relatives, in this case, failed to complain. Findings Thematic analysis revealed a complex range of emotions experienced by relatives that contributed to a conflict between what they believed to be the correct response and how they behaved in reality, which led to a culture of acceptance. Analysis revealed some relatives were reluctant to “interfere” for fear of possible negative repercussions, thus they downplayed issues in an attempt not to “rock the boat”. Originality/value This paper discusses the flaws in the policy emphasis on personalisation and the reliance on family members as advocates, and concludes with suggestions on how care homes may foster an environment where relatives, and indeed residents, feel comfortable to raise issues and concerns.

The Long-Term Conditions Questionnaire: conceptual framework and item development

Purpose To identify the main issues of importance when living with long-term conditions to refine a conceptual framework for informing the item development of a patient-reported outcome measure for long-term conditions. Materials and methods Semi-structured qualitative interviews (n=48) were conducted with people living with at least one long-term condition. Participants were recruited through primary care. The interviews were transcribed verbatim and analyzed by thematic analysis. The analysis served to refine the conceptual framework, based on reviews of the literature and stakeholder consultations, for developing candidate items for a new measure for long-term conditions. Results Three main organizing concepts were identified: impact of long-term conditions, experience of services and support, and self-care. The findings helped to refine a conceptual framework, leading to the development of 23 items that represent issues of importance in long-term conditions. The 23 candidate items formed the first draft of the measure, currently named the Long-Term Conditions Questionnaire. Conclusion The aim of this study was to refine the conceptual framework and develop items for a patient-reported outcome measure for long-term conditions, including single and multiple morbidities and physical and mental health conditions. Qualitative interviews identified the key themes for assessing outcomes in long-term conditions, and these underpinned the development of the initial draft of the measure. These initial items will undergo cognitive testing to refine the items prior to further validation in a survey.

Being occupied: supporting ‘meaningful activity’ in care homes for older people in England

ABSTRACT The benefits of meaningful activity in later life are well documented. Studies show that being occupied contributes to both physical and mental health as well as quality of life. Research also suggests that activity may be beneficial to people residing in care homes, including people living with dementia. This paper presents findings from a study which used the Adult Social Care Outcomes Toolkit (ASCOT) to measure quality of life in six care homes located in the south-east of England. The study found, like previous ones, that care home residents’ days were characterised by a lack of activity. Drawing on observations, interviews and focus groups with residents and staff from these homes, this paper attempts to understand why care home residents do not engage in meaningful activities. We reject the idea that these low levels of activity are a natural part of the ageing process or that they can be explained by notions of resident choice. Instead, the findings point to both insufficient funding and working practices within care homes as more substantive explanations. These explanations inform a discussion of how the low levels of engagement in meaningful activity could be addressed and residents’ quality of life improved.

Adapting the adult social care outcomes toolkit (ASCOT) for use in care home quality monitoring: conceptual development and testing

BackgroundAlongside an increased policy and practice emphasis on outcomes in social care, English local authorities are now obliged to review quality at a service level to help in their new role of ensuring the development of diverse and high-quality care markets to meet the needs of all local people, including self-funders. The Adult Social Care Outcomes Toolkit (ASCOT) has been developed to measure the outcomes of social care for individuals in a variety of care settings. Local authorities have expressed an interest in exploring how the toolkit might be used for their own purposes, including quality monitoring. This study aimed to explore how the care homes version of the ASCOT toolkit might be adapted for use as a care home quality indicator and carry out some preliminary testing in two care homes for older adults.MethodsConsultations were carried out with professional and lay stakeholders, with an interest in using the tool or the ratings it would produce. These explored demand and potential uses for the measure and fed into the conceptual development. A draft toolkit and method for collecting the data was developed and the feasibility of using it for quality monitoring was tested with one local authority quality monitoring team in two homes for older adults.ResultsStakeholders expressed an interest in care home quality ratings based on residents’ outcomes but there were tensions around who might collect the data and how it might be shared. Feasibility testing suggested the measure had potential for use in quality monitoring but highlighted the importance of training in observational techniques and interviewing skills. The quality monitoring officers involved in the piloting recommended that relatives’ views be collected in advance of visits, through surveys not interviews.ConclusionsFollowing interest from another local authority, a larger evaluation of the measure for use in routine quality monitoring is planned. As part of this, the ratings made using this measure will be validated against the outcomes of individual residents and compared with the quality ratings of the regulator, the Care Quality Commission.