Inclusive approaches to developing content valid patient‐reported outcome measure response scales for youth with intellectual/developmental disabilities

Abstract

Accessible Summary People with disabilities have the right to use patient‐reported outcome measures (PROMs) to tell their doctors and therapists what they think and feel. Therefore, PROMs need to be accessible for people with disabilities. This means that the questions and the response choices for the questions need to be easy to understand. Response choices can be words like, “yes” and “no,” or “agree” and “disagree,” or “easy” and “hard.” To make sure that the response choices are easy to understand, it is a good idea to collaborate with people with disabilities when designing PROM response choices, or response scales. We describe how we worked with 8 young people with disabilities to make an easy‐to‐use response scale for a PROM. After our data collection and work together, we decided the best response scale was “very easy,” “a little easy,” “a little hard.” This research is important, because other researchers and people making PROMs can use our process to help make their response scales easy to use. Abstract Background Patient‐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. Methods In 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 ( n = 62); and 3) Analysing data to refine response options. Results Through 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”). Conclusion An 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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