James Caiels

Measuring the outcomes of long-term care

How should we measure the value of long-term (social) care? This paper describes a care-related quality of life instrument (ASCOT) and considers aspects of its validity. In particular the aim is to assess whether ASCOT is better suited to measuring the impact of long-term care services than the EQ5D health-related quality of life measure. Long-term care services tend to be more concerned with addressing the day-to-day consequences of long-term conditions. As such, a quality of life measure should not be overly focused on the potential impact of services on personal ability and should instead consider how services directly help people to function in everyday life. Construct validity was judged by assessing the degree to which measured quality of life improvement was consistent with the theorised positive correlation between quality of life and the use of home care services. In a 2008/9 sample of people using care services in England, we found that the impact of service use was significant when measured by ASCOT, but not significant when using EQ5D. The results support our hypothesis that ASCOT has greater construct validity in this case.

Personalization in the health care system: do personal health budgets have an impact on outcomes and cost?

Objectives In England’s National Health Service, personal health budgets are part of a growing trend to give patients more choice and control over how health care services are managed and delivered. The personal health budget programme was launched by the Department of Health in 2009, and a three-year independent evaluation was commissioned with the aim of identifying whether the initiative ensured better health- and care-related outcomes and at what cost when compared to conventional service delivery. Methods The evaluation used a pragmatic controlled trial design to compare the outcomes and costs of patients selected to receive a personal health budget with those continuing with conventional support arrangements (control group). Just over 1000 individuals were recruited into the personal health budget group and 1000 into the control group in order to ensure sufficient statistical power, and followed for 12 months. Results The use of personal health budgets was associated with significant improvement in patients’ care-related quality of life and psychological wellbeing at 12 months. Personal health budgets did not appear to have an impact on health status, mortality rates, health-related quality of life or costs over the same period. With net benefits measured in terms of care-related quality of life on the adult social care outcome toolkit measure, personal health budgets were cost-effective: that is, budget holders experienced greater benefits than people receiving conventional services, and the budgets were worth the cost. Conclusion The evaluation provides support for the planned wider roll-out of personal health budgets in the English NHS after 2014 in so far as the localities in the pilot sample are representative of the whole country.

Developing an Easy Read Version of the Adult Social Care Outcomes Toolkit (ASCOT)

BACKGROUND This study reports the experiences of developing and pre-testing an Easy Read version of the Adult Social Care Outcomes Toolkit (ASCOT) for self-report by people with intellectual disabilities. METHODS The study has combined survey development and pre-testing methods with approaches to create accessible information for people with intellectual disabilities. A working group assisted researchers in identifying appropriate question formats, pictures and wording. Focus groups and cognitive interviews were conducted to test various iterations of the instrument. RESULTS Substantial changes were made to the questionnaire, which included changes to illustrations, the wording of question stems and response options. CONCLUSIONS The process demonstrated the benefits of involving people with intellectual disabilities in the design and testing of data collection instruments. Adequately adapted questionnaires can be useful tools to collect information from people with intellectual disabilities in survey research; however, its limitations must be recognized.

Developing a proxy version of the Adult social care outcome toolkit (ASCOT)

BackgroundSocial care-related quality of life is a key outcome indicator used in the evaluation of social care interventions and policy. It is not, however, always possible to collect quality of life data by self-report even with adaptations for people with cognitive or communication impairments.A new proxy-report version of the Adult Social Care Outcomes Toolkit (ASCOT) measure of social care-related quality of life was developed to address the issues of wider inclusion of people with cognitive or communication difficulties who may otherwise be systematically excluded. The development of the proxy-report ASCOT questionnaire was informed by literature review and earlier work that identified the key issues and challenges associated with proxy-reported outcomes.MethodsTo evaluate the acceptability and content validity of the ASCOT-Proxy, qualitative cognitive interviews were conducted with unpaid carers or care workers of people with cognitive or communication impairments. The proxy respondents were invited to ‘think aloud’ while completing the questionnaire. Follow-up probes were asked to elicit further detail of the respondent’s comprehension of the format, layout and content of each item and also how they weighed up the options to formulate a response.ResultsA total of 25 unpaid carers and care workers participated in three iterative rounds of cognitive interviews. The findings indicate that the items were well-understood and the concepts were consistent with the item definitions for the standard self-completion version of ASCOT with minor modifications to the draft ASCOT-Proxy. The ASCOT-Proxy allows respondents to rate the proxy-proxy and proxy-patient perspectives, which improved the acceptability of proxy report.ConclusionsA new proxy-report version of ASCOT was developed with evidence of its qualitative content validity and acceptability. The ASCOT-Proxy is ready for empirical testing of its suitability for data collection as a self-completion and/or interview questionnaire, and also evaluation of its psychometric properties.

Implementing personal health budgets in England: a user-led approach to substance misuse

Abstract Personal health budgets (PHBs) in England have been viewed as a vehicle for developing a personalised patient‐based strategy within the substance misuse care pathway. In 2009, the Department of Health announced a 3‐year pilot programme of PHBs to explore opportunities offered by this new initiative across a number of long‐term health conditions, and commissioned an independent evaluation to run alongside as well as a separate study involving two pilot sites that were implementing PHBs within the substance misuse service. The study included a quantitative and qualitative strand. The qualitative strand involved 20 semi‐structured interviews among organisational representatives at two time points (10 at each time point) between 2011 and 2012 which are the focus for this current paper. Overall, organisational representatives believed that PHBs had a positive impact on budget‐holders with a drug and/or alcohol misuse problem, their families and the health and social care system. However, a number of concerns were discussed, many of which seemed to stem from the initial change management process during the early implementation stage of the pilot programme. This study provides guidance on how to implement and offer PHBs within the substance misuse care pathway: individuals potentially would benefit from receiving their PHB post‐detox rather than at a crisis point; PHBs have the potential to improve the link to after‐care services, and direct payments can provide greater choice and control, but sufficient protocols are required.