Aim
The aim of the AdaptQoL project is to develop a new patient-reported outcome measure (PROM) for assistive technology users. PROMs are questionnaire tools commonly used to measure individual health outcomes, like quality of life and symptom management. Sometimes PROMs are preference-based, which means that they reflect patient or societal preferences for different states of health. In this project we aim to develop a new preference-based PROM which will support health economists, clinicians, therapists and patients to accurately measure the quality of life benefits of different assistive technologies, both for the purpose of informing patient care and informing decision-making.
Background
Almost a quarter of the UK population has some form of disability, equating to more than 16 million people. For people who live with a disability, assistive technologies can facilitate, promote and improve participation in education, work, social/leisure activities, and overall independence. Assistive technology is a broad term which refers to many different low- and high-tech devices and interventions, such as wheelchairs, hearing aids, home adaptations, communication aids, environmental controls, aids for personal care and so on.
More than 30% of the global population utilises one or more assistive technologies. Despite the great potential of assistive technologies to support people with disabilities and chronic conditions, around 70% of these devices are abandoned prematurely due to issues with design and usability.
We believe there is great potential to enhance assistive technology provision through better outcome measurement; a recent systematic review by Borgnis et al (2023) found that 53 different outcome measures have been used to assess assistive technologies, but only 32% of these measures were specifically designed to evaluate assistive technologies, none of which were preference-based. Furthermore, 64% had only been used in one study, demonstrating poor uniformity and concordance.
Our ambition is that the AdaptQoL PROM will fill this gap in preference-based measurement options and provide a unified approach to health-related quality of life outcome measurement in this context.
Planned research
The AdaptQoL project will consist of four work packages:
- Development of the AdaptQoL descriptive system (i.e. survey questions and answers) by interviewing a range (n=40) of assistive technology users to understand the relationship between health, impairment, adaptation and quality of life
- Refining the AdaptQoL descriptive system through piloting (n=250) in relevant patient groups - this will include assessment of psychometric properties using Rasch analysis and exploratory factor analysis
- Development of a preference-based scoring system using the Online Elicitation of Personal Utility Functions (OPUF) method - additionally we will compare differences in the health state preferences of the general public (n=300) and people who have experience of using assistive technology (n=300)
- Development of a Welsh language version of the AdaptQoL, using linguistic validation and cognitive interviewing of relevant stakeholders (n=10)
Contact details
If you would like to find out more about this project, please contact Chief Investigator Dr Nathan Bray: n.bray@bangor.ac.uk
The AdaptQoL project will run until April 2027 and is funded by the Welsh Government through Health and Care Research Wales.