ArticleBritish journal of learning disabilities2021
Inclusive approaches to developing content valid patient-reported outcome measure response scales for youth with intellectual/developmental disabilities.
Article in British journal of learning disabilities, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers.
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Who cites it
10 citing papers in PubMed, 19 citations in OpenAlex.
- The Many Faces of Engagement: A Scoping Review of Paediatric Patient and Family Engagement in Clinical Care, Education and Research.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Engaging people with lived experience of psychological disorders: Current research and future directions for community-engaged measure development in psychological science.Clinical psychological science : a journal of the Association for Psychological Science · 2025Article
- Psychometric properties of the Pediatric Evaluation of Disability Inventory - Patient Reported Outcome: A cognitively accessible measure of functional performance.Developmental medicine and child neurology · 2025Article
- Interpretability and Clinical Utility of the Pediatric Evaluation of Disability Inventory - Patient Reported Outcome (PEDI-PRO) Score Report.Physical & occupational therapy in pediatrics · 2025Article
- Enhancing data practices for Whole Health: Strategies for a transformative future.Learning health systems · 2024Article
- Community-based participatory-research through co-design: supporting collaboration from all sides of disability.Research involvement and engagement · 2024Article
- Self-Report Measurement of Well-Being in Autistic Adults: Psychometric Properties of the PERMA Profiler.Autism in adulthood · 2023Article
- Development and content validity of the Person Experiences Interview Survey (PEIS): a measure of the mental health services experiences of people with developmental disabilities.Frontiers in psychiatry · 2023Article
- Facilitating the inclusion of adults with intellectual disability as direct respondents in research: Strategies for fostering trust, respect, accessibility and engagement.Journal of applied research in intellectual disabilities : JARID · 2022Article
- A survey study of the attitudes and experiences of adults with intellectual disability regarding participation in research.Journal of intellectual disability research : JIDR · 2021Article
Corrections and comments
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Authors and funding
3 authors at 2 institutions in 1 country.
Funding
Abstract
backgroundPatient-reported outcome measures (PROMs) are increasingly used in health care to evaluate service quality and client progress. Response scales are a critical component of PROM content validity and must be designed to be relevant and comprehensible by users.
methodsIn collaboration with eight youth co-researchers with intellectual/developmental disabilities ages 14-21, we used an iterative, three-stage approach to develop and select a response scale for the PEDI-PRO. Stages: 1) inclusive development of response scale options; 2) Collecting data about response scale options during focus groups with youth with intellectual/ developmental disabilities (
resultsThrough two cycles of the three-stage process, the inclusive research approach led to the development of a content valid response scale that describes functional performance of everyday activities ("very easy," "a little easy," "a little hard").
conclusionAn inclusive research approach can support the development of content valid PROM scales. We identified four broad strategies that supported youth co-researchers to engage in this response scale development process: universal design for learning, use of lived experiences, breaking down tasks, and peer support. Researchers may adopt and/or adapt the accessible inclusive research approaches described in this manuscript for measurement development and other research projects.
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