{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"institution":[{"name":"medRxiv"}],"indexed":{"date-parts":[[2026,1,14]],"date-time":"2026-01-14T16:10:05Z","timestamp":1768407005944,"version":"3.49.0"},"posted":{"date-parts":[[2026,1,11]]},"group-title":"Rehabilitation Medicine and Physical Therapy","reference-count":19,"publisher":"openRxiv","license":[{"start":{"date-parts":[[2026,1,11]],"date-time":"2026-01-11T00:00:00Z","timestamp":1768089600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/www.medrxiv.org\/about\/FAQ#license"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"accepted":{"date-parts":[[2026,1,11]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                <jats:sec>\n                  <jats:title>Introduction<\/jats:title>\n                  <jats:p>Engaging individuals with lived experience enhances the rigor and real-world relevance of clinical research. In adolescent idiopathic scoliosis (AIS), where non-surgical evidence remains limited, involving patients and caregivers informs design, recruitment, and retention for future trials.<\/jats:p>\n                <\/jats:sec>\n                <jats:sec>\n                  <jats:title>Methods<\/jats:title>\n                  <jats:p>Using the Community Engagement (CE) Studio model, we conducted a 1.5-hour virtual session with children aged 10-16 years with AIS and their caregivers residing in North America. Participants (no spinal surgery; with\/without brace) were recruited through engagement databases, advocacy organizations, and social media. A trained facilitator led structured discussions. Responses were thematically synthesized, including summaries related to recruitment, retention, study protocol, meaningful outcomes and treatment success. Participants received compensation and a follow-up Qualtrics survey. The CE Studio, based on the Vanderbilt model is advisory, and IRB- exempt.<\/jats:p>\n                <\/jats:sec>\n                <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>Of 81 respondents, 31 were eligible and 18 participated (nine girls, nine caregivers) representing seven ethnicities across nine U.S. states. All participants valued the proposed multicenter RCT on scoliosis exercise rehabilitation and expressed willingness to enroll; 78% would accept randomization to either the active or 6-month waitlist control arm. Reported barriers included limited access to physiotherapy (43%), physician skepticism (57%), and bracing preference (43%). The most bothersome symptoms were pain (50%) and brace discomfort (17%). Prioritized outcomes included preventing curve progression, avoiding surgery, pain reduction, and improved appearance.<\/jats:p>\n                <\/jats:sec>\n                <jats:sec>\n                  <jats:title>Conclusions<\/jats:title>\n                  <jats:p>Participants expressed strong willingness to enroll, emphasizing pain, progression, and access to care as key barriers. Improved communication with providers about non-surgical options was viewed as essential to support shared decision-making.<\/jats:p>\n                <\/jats:sec>","DOI":"10.64898\/2026.01.06.26343535","type":"posted-content","created":{"date-parts":[[2026,1,11]],"date-time":"2026-01-11T13:40:13Z","timestamp":1768138813000},"source":"Crossref","is-referenced-by-count":1,"title":["Utilization of the Community Engagement Studio model to facilitate participatory design of a multicenter randomized controlled trial of the efficacy of scoliosis specific exercise rehabilitation"],"prefix":"10.64898","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-8231-5131","authenticated-orcid":false,"given":"Sanja","family":"Schreiber","sequence":"first","affiliation":[{"name":"Faculty of Rehabilitation Medicine, College of Health Sciences, University of Alberta, Edmonton, AB, Canada"},{"name":"Curvy Spine-Specialized Scoliosis, Kyphosis and Other Spinal Disorders Centre, Edmonton, AB, Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4802-1049","authenticated-orcid":false,"given":"Patricia J","family":"Piechowski","sequence":"additional","affiliation":[{"name":"Michigan Institute for Clinical & Health Research, University of Michigan, Ann Arbor, MI, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0009-0004-2330-4522","authenticated-orcid":false,"given":"Amber","family":"Basnaw","sequence":"additional","affiliation":[{"name":"Michigan Institute for Clinical & Health Research, University of Michigan, Ann Arbor, MI, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0009-0007-5153-7747","authenticated-orcid":false,"given":"Knoll","family":"Larkin","sequence":"additional","affiliation":[{"name":"Michigan Institute for Clinical & Health Research, University of Michigan, Ann Arbor, MI, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1793-3977","authenticated-orcid":false,"given":"Dominique L","family":"Kinnett-Hopkins","sequence":"additional","affiliation":[{"name":"School of Kinesiology, University of Michigan, Ann Arbor, MI, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3664-3898","authenticated-orcid":false,"given":"Anna L","family":"Kratz","sequence":"additional","affiliation":[{"name":"Department of Physical Medicine & Rehabilitation, University of Michigan, Ann Arbor, MI, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5234-3978","authenticated-orcid":false,"given":"Emily C","family":"Somers","sequence":"additional","affiliation":[{"name":"Department of Internal Medicine, University of Michigan, Ann Arbor, MI, USA"},{"name":"Department of Environmental Health Sciences, University of Michigan, Ann Arbor, MI, USA"},{"name":"Department of Obstetrics & Gynecology, University of Michigan, Ann Arbor, MI, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"54368","reference":[{"key":"2026011307501864000_2026.01.06.26343535v1.1","doi-asserted-by":"publisher","DOI":"10.1007\/s11832-012-0457-4"},{"key":"2026011307501864000_2026.01.06.26343535v1.2","doi-asserted-by":"publisher","DOI":"10.1016\/j.semarthrit.2016.07.013"},{"key":"2026011307501864000_2026.01.06.26343535v1.3","doi-asserted-by":"publisher","DOI":"10.1186\/1748-7161-8-17"},{"key":"2026011307501864000_2026.01.06.26343535v1.4","doi-asserted-by":"publisher","DOI":"10.1093\/pch\/15.3.157"},{"key":"2026011307501864000_2026.01.06.26343535v1.5","doi-asserted-by":"publisher","DOI":"10.1186\/s12913-015-1152-1"},{"key":"2026011307501864000_2026.01.06.26343535v1.6","doi-asserted-by":"publisher","DOI":"10.1097\/BRS.0b013e318059b5f7"},{"key":"2026011307501864000_2026.01.06.26343535v1.7","unstructured":"Nelson, James S O. Idiopathic Scoliosis | SRS Education Resource Center. Accessed October 27, 2025. https:\/\/educationresources.srs.org\/adolescent-idiopathic-scoliosis\/idiopathic-scoliosis"},{"key":"2026011307501864000_2026.01.06.26343535v1.8","doi-asserted-by":"publisher","DOI":"10.1097\/nor.0b013e31823710a0"},{"key":"2026011307501864000_2026.01.06.26343535v1.9","doi-asserted-by":"publisher","DOI":"10.1111\/os.70073"},{"key":"2026011307501864000_2026.01.06.26343535v1.10","doi-asserted-by":"publisher","DOI":"10.1097\/BPO.0b013e3181fd87d5"},{"key":"2026011307501864000_2026.01.06.26343535v1.11","doi-asserted-by":"crossref","unstructured":"Schreiber S , Somers EC. Breaking the Curve: A Call for Comprehensive Scoliosis Awareness and Care. The Conversation - Canada. https:\/\/theconversation.com\/breaking-the-curve-a-call-for-comprehensive-scoliosis-awareness-and-care-217495. 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