Dr Stacey Rand is a Senior Research Fellow at the PSSRU, University of Kent. Her research interests include quality and safety of care, the impact of support for unpaid (family/friend) carers, and quality of life outcome measurement and application in adult social care. She has recently stepped into the role of Programme Lead for the Adult Social Care Outcomes Toolkit (ASCOT). In this blog post, Stacey introduces the ASCOT measures (www.pssru.ac.uk/ascot).

The Adult Social Care Outcomes Toolkit (ASCOT) is a family of measures (self-complete or interview questionnaires) designed to assess the quality of life (QoL) of people using adult social care services*. ASCOT is used to evaluate the effectiveness of social care interventions in improving a person’s overall well-being, focusing not just on health, but on broader aspects of QoL related to care and support.

The ASCOT measures can capture QoL from different perspectives:

• People, aged 18 or over, using social care services and support (ASCOT-SCT4);
• Their unpaid (family/friend) carers, aged 18 or over (ASCOT-Carer), and;
• The adult social care workforce (ASCOT-Workforce).

This reflects the wider impact of social care on people’s QoL. This is important to consider, especially when developing new types of service or policies. People with care and support needs are at the centre, but it is also important to consider impacts on family and care workers, especially as there is evidence that care-related QoL outcomes are inter-related.

In the words of one family carer:

            “If we’re getting the right services, he’s happy and I’m happy. We’re all happy bunnies.”

Key Features of ASCOT

1. A focus on social care outcomes, to measure what matters

: Unlike health-related QoL measures, ASCOT is designed to capture the QoL outcomes that matter most to people and are directly influenced by adult social care services and support.

To explain what we mean, we can reflect on what adult social care services are trying to achieve. In an ideal situation, the goal (‘outcome’) of adult social care services is to support people to live as they wish, and to do the things they’d like to do. ASCOT is designed to capture how well services are actually able to achieve this, by asking about people’s lives, such as whether they are in control over daily life and have a choice, feel safe, and are treated by staff with dignity.

2. Different versions, to understand the wider impact of care: There are different versions of the toolkit, as noted above, for people using care and support, their carers and the social care workforce. These different versions enable each group to be asked about the things that matter for them and their own QoL outcomes.

In some cases, there are overlaps, such as feeling safe. (We all want to feel safe.)

But sometimes people from one group have particular needs or experiences that are important to consider. For example, unpaid carers told us that it was important for them to be able to have time and space to be themselves, when they are able to ‘switch off’ from caring. Adult social care services can help by (ideally) giving carers a break when they need it. Also, high-quality quality, reliable and safe care can help carers to relax, and not worry about the person they support when they are taking a break. This is why the carer version (ASCOT-Carer) includes a question to ask about this.

The availability of different ASCOT measures allows a comprehensive assessment of the quality of life impact from different perspectives, whilst still also considering each individual’s perspective.

3. Maximising involvement and inclusion: There are also different versions of ASCOT for people with care and support needs, which are designed to allow flexibility and support people to give their views. The aim is to ensure that people are included and given the opportunity to express their views and perspective, when traditional self-report or interviews are not possible.

These versions include the ASCOT-ER and ASCOT-ER-OP for adults with intellectual disabilities and older adults, which use simplified text (and pictures) in a way that help people to better understand, weigh up and respond to the questions. There is also a residential and nursing care home version (ASCOT-CH4) that combines observation of care delivered in the home, one-to-one interviews with residents, and speaking with family and care staff.

Example illustration from the ASCOT-ER (food and drink)

© PSSRU at the University of Kent

Although asking people about their views and perspective is the ideal, there are also instances when this is simply not possible. Therefore, we have also developed a version of ASCOT, where someone who knows a person well (whether family or direct care staff) can report on behalf of the person (ASCOT-Proxy). This can be used alongside self-report (as a separate source of information, not to replace the person’s own views) or when someone is unable to self-report and would otherwise be excluded from research or data collections (to give an indication of their views).

4. Flexible application in data collection: ASCOT can be used in different settings, including residential care homes, community-based services (e.g. day centres), and domiciliary care. It can be used for individual-level assessment and care planning and/or for larger-scale data collection to evaluate the quality and effectiveness of social care services and policies.

ASCOT measures have been used in over 40 research studies (excluding measure development or testing), in the UK and internationally. Examples include:

• To understand the unmet needs and QoL outcomes of family carers of people with dementia in England;
• To demonstrate the impact of public spending on care in England;
• To compare the quality and effectiveness of homecare in the UK, Austria and Finland;
• To understand the QoL outcomes of English care home residents, especially associations with regulatory quality rating and workforce issues;
• To evaluate specialist nursing support (Admiral Nurses) for carers of people with dementia.

All of these studies and different uses provide important evidence that can be used to inform, influence and guide service design, delivery and policy.

5. Evidence-Based and validated, yet also Co-designed: Developed by researchers at the University of Kent, the ASCOT measures have been validated through extensive research. The original English and translated versions (e.g. German, Dutch, Finnish, Japanese and Spanish) have been found to be valid and reliable measures of social care QoL outcomes, both for people with care and support needs (older adults, aged 65+, and adults aged 18-64 years) and their unpaid carers, across contexts (e.g. residential care, homecare).

This research has been underpinned by ongoing active participation and involvement of people, both in initial development and ongoing testing of the measures. This is important to ensure that the ASCOT measures ask about what matters most to people, in a way that is acceptable and meaningful to them.

For example, two recently developed versions for adults with intellectual disabilities (ASCOT-ER) and older adults (ASCOT-ER-OP) were co-produced by researchers working with people with disabilities and older adults, respectively.

You can find out more about how we worked together and why it mattered, in this short video or summary.

Using ASCOT measures

ASCOT is used by a range of people, including policymakers and analysts, service providers, and researchers to:

• Evaluate and improve the quality of social care services.
• Inform funding decisions and service planning.
• Capture the value and impact of adult social care on people’s lives, beyond traditional health outcomes.
• Track changes in QoL over time for individuals receiving care, as part of care planning.

By focusing on the broader aspects of QoL, ASCOT helps ensure that care services not only meet basic needs but also enhance overall quality of life.

How to find out more

Please see our website (www.pssru.ac.uk/ascot) or contact us: ascot@kent.ac.uk.