Measuring healthcare experiences among people with intellectual disability: a rapid evidence synthesis of tools and methods

Objectives Patient-reported experience measures (PREMs) collect essential data for service and system-wide quality improvement and performance monitoring towards value-based care. However, the experiences of people with intellectual disability, who have high healthcare utilisation couple with poorer outcomes, are often omitted from system-wide PREMs and service-wide PREMs data. The use of PREMs instruments for data collection among people with intellectual disability has not been explored. This review aimed to identify and synthesise measurement tools and approaches that have been used to gather patient-reported experience data from people with intellectual disability. Methods Rapid Evidence Assessment (REA) was employed in which comprehensive search strategies were applied to electronic databases and grey literature. Narrative synthesis was employed with the included articles to address the review aim. Results A total of 48 documents were included; 26 peer-reviewed journal articles and 22 articles from grey literature. Patient-reported experiences have been gathered from people with intellectual disabilities in relation to specific services or encounters, predominantly using qualitative methods. To date, there is an absence of targeted service- or system-wide surveys. Existing clinic- and condition-specific instruments provide insight for broader application. Conclusions Patient experience assessment among people with intellectual disability requires consideration of a) how individuals are identified and approached, b) the content, design and structure of measurement instruments and c) the process by which data are collected and d) how it may be applied to create change. Despite the collection of patient experience data from people with intellectual disability, there is little research available about how this information is later used to support health service improvement. Applying PREMs for quality improvement is critical to realise the improvements to healthcare provision required for people with intellectual disability towards equitable care quality.