{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,20]],"date-time":"2026-08-20T14:48:50Z","timestamp":1787237330148,"version":"build-2736575974"},"reference-count":35,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2020,10,6]],"date-time":"2020-10-06T00:00:00Z","timestamp":1601942400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100009633","name":"Eunice Kennedy Shriver National Institute of Child Health and Human Development","doi-asserted-by":"publisher","award":["R41HD090772"],"award-info":[{"award-number":["R41HD090772"]}],"id":[{"id":"10.13039\/100009633","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Brit J Learn Disabil"],"published-print":{"date-parts":[[2021,3]]},"abstract":"<jats:title>Accessible Summary<\/jats:title>\n                  <jats:sec>\n                    <jats:label\/>\n                    <jats:p>\n                      <jats:list list-type=\"bullet\">\n                        <jats:list-item>\n                          <jats:p>People with disabilities have the right to use patient\u2010reported 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, \u201cyes\u201d and \u201cno,\u201d or \u201cagree\u201d and \u201cdisagree,\u201d or \u201ceasy\u201d and \u201chard.\u201d<\/jats:p>\n                        <\/jats:list-item>\n                        <jats:list-item>\n                          <jats:p>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.<\/jats:p>\n                        <\/jats:list-item>\n                        <jats:list-item>\n                          <jats:p>We describe how we worked with 8 young people with disabilities to make an easy\u2010to\u2010use response scale for a PROM.<\/jats:p>\n                        <\/jats:list-item>\n                        <jats:list-item>\n                          <jats:p>After our data collection and work together, we decided the best response scale was \u201cvery easy,\u201d \u201ca little easy,\u201d \u201ca little hard.\u201d<\/jats:p>\n                        <\/jats:list-item>\n                        <jats:list-item>\n                          <jats:p>This research is important, because other researchers and people making PROMs can use our process to help make their response scales easy to use.<\/jats:p>\n                        <\/jats:list-item>\n                      <\/jats:list>\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Abstract<\/jats:title>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Patient\u2010reported 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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>\n                      In collaboration with eight youth co\u2010researchers with intellectual\/developmental disabilities ages 14\u201321, we used an iterative, three\u2010stage approach to develop and select a response scale for the PEDI\u2010PRO. 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                      <jats:italic>n<\/jats:italic>\n                      \u00a0=\u00a062); and 3) Analysing data to refine response options.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Through two cycles of the three\u2010stage process, the inclusive research approach led to the development of a content valid response scale that describes functional performance of everyday activities (\u201cvery easy,\u201d \u201ca little easy,\u201d \u201ca little hard\u201d).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>An inclusive research approach can support the development of content valid PROM scales. We identified four broad strategies that supported youth co\u2010researchers 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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/bld.12346","type":"journal-article","created":{"date-parts":[[2020,10,7]],"date-time":"2020-10-07T03:00:31Z","timestamp":1602039631000},"page":"100-110","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":20,"title":["Inclusive approaches to developing content valid patient\u2010reported outcome measure response scales for youth with intellectual\/developmental disabilities"],"prefix":"10.1111","volume":"49","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-4051-8870","authenticated-orcid":false,"given":"Ariel E.","family":"Schwartz","sequence":"first","affiliation":[{"name":"Boston University Boston MA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jessica M.","family":"Kramer","sequence":"additional","affiliation":[{"name":"University of Florida Gainesville FL USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"PEDI\u2010PRO Youth Team","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2020,10,6]]},"reference":[{"key":"e_1_2_8_2_1","first-page":"1","volume-title":"Six theories of child development","author":"Bandura A.","year":"1989"},{"key":"e_1_2_8_3_1","doi-asserted-by":"publisher","DOI":"10.1111\/jar.12082"},{"key":"e_1_2_8_4_1","doi-asserted-by":"publisher","DOI":"10.1111\/jar.12083"},{"key":"e_1_2_8_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/bld.12020"},{"key":"e_1_2_8_6_1","volume-title":"Efficiency in learning: Evidence\u2010based guidelines to manage cognitive load","author":"Clark R. 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