Understanding how users of home-based aged care services with cognitive impairment rate their social care related quality of life.

Background: Over the past decades, self-directed models of care have been implemented throughout the world to support older people, including those with dementia, to live at home. However, there is limited information about how self-directed home care is experienced by older people with cognitive impairment and dementia, and how their thinking informs their care choices and quality of life.

Methods: We used the ASCOT-Easy Read, a staggered reveal method, talk aloud techniques, probing questions, and physical assistance to support users of self-directed home care in Australia with cognitive impairment and dementia to discuss their Social Care Related Quality of Life (SCRQoL).

Enhancing quality of life measurement: adapting the ASCOT easy read for older adults accessing social care.

Purpose: This study aimed to adapt and assess the content validity of the ASCOT Easy Read (ASCOT-ER) for older people accessing social care.

Methods: A co-production working group of 8 older social care users and their supporters was established to evaluate the comprehensibility and relevance of the ASCOT-ER images, wording and layout. Changes made by the working group were iteratively tested using cognitive interviewing techniques (think aloud) with 25 older social care users not able to self-complete the original ASCOT.

Assessing progress in managing and improving quality in nascent integrated care systems in England.

Objectives: In 2022, England embarked on an ambitious reorganisation to produce an integrated health and care system, intended also to maximise population health. The newly created integrated care systems (ICSs) aim to improve quality of care, by achieving the best outcomes for individuals and populations through the provision of evidence-based services. An emerging approach for managing quality in organisations is the Quality Management System (QMS) framework.

Supporting the involvement of older adults with complex needs in evaluation of outcomes in long-term care at home programmes.

Background: It is important to involve older people in evaluating public programmes that affect their lives. This includes those with physical and cognitive impairments (such as dementia) who may need support to live at home. Many countries have implemented new approaches to support older people to live well at home for longer.

Exploring the views of being a proxy from the perspective of unpaid carers and paid carers: developing a proxy version of the Adult Social Care Outcomes Toolkit (ASCOT).

Background: Outcomes-based policy and administration of public services present a compelling argument for the value of outcomes data. However, there are a number of challenges inherent in collecting these data from people who are unable to complete a paper-based survey or interview due to cognitive or communication impairments. In this paper, we explore the views of being a proxy from the perspective of unpaid carers and paid carers who may be asked to act as a proxy on behalf of the person(s) they care for.

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

Background: Social 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.

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.

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

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.

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).

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.