Adaptation and Quality of Life: Improving methods of outcome measurement in disability, adaptation and assistive technology use (AdaptQoL)
Across the UK, almost a quarter of the population has a disability or impairment. It is common for disabled people to use assistive technologies and adaptive interventions to help with everyday tasks. 'Assistive technology' refers to a wide range of different types of devices and aids (e.g. wheelchairs and hearing aids); while 'adaptive interventions' refers to non-technological aids to independence, such as human assistance and even animal interventions (e.g. guide dogs).
The NHS and social care spend millions of pounds a year providing assistive and adaptive interventions to people with disabilities and chronic conditions. However, these public services have a limited budget so tough decisions need to be made about what can be provided.
The National Institute for Health and Care Excellence (NICE) is an independent organisation which helps the NHS and social care decide which interventions (i.e. treatments, services, devices) to provide. To determine whether an intervention is cost-effective, NICE collate evidence on the relationship between how much an intervention costs and how much it improves patient outcomes (e.g. length and quality of life). The better the ratio between costs and outcomes, the more cost-effective something is.
When measuring the cost-effectiveness of healthcare, NICE recommends an outcome known as the quality-adjusted life year (QALY). A QALY combines length of life and quality of life into a single number, which can be used to compare the costeffectiveness of many different interventions. This helps the NHS decide how to prioritise different interventions. Outcomes are typically recorded using short questionnaire surveys (i.e. outcome measures) about health and quality of life. These surveys are usually generic, which means that they are meant to be non-disease specific. Therefore, they do not take account of how people adapt to changing circumstances in relation to their physical and/or mental health.
The aim of this project is to develop a new survey, called AdaptQoL, to help patients, researchers and medical/social care professionals to accurately measure how assistive and adaptive interventions improve health and quality of life, and how adaptation can influence this. We’ll interview people who have various disabilities and impairments to understand what health and quality of life mean to them, then develop the AdaptQoL survey based on their answers. We’ll then test the survey to make sure that it is accurate and reliable, and also make a Welsh version of it. Finally, we’ll create a QALY-based scoring system by asking a large number of people to rank the combinations of answers found on the AdaptQoL.
This project will help to improve how we measure the benefits of different assistive and adaptive interventions, which will help health and social care services to ensure that they are providing the best value devices and forms of care.