{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,12]],"date-time":"2026-03-12T12:29:39Z","timestamp":1773318579845,"version":"3.50.1"},"reference-count":57,"publisher":"SAGE Publications","issue":"1","license":[{"start":{"date-parts":[[2026,1,1]],"date-time":"2026-01-01T00:00:00Z","timestamp":1767225600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"},{"start":{"date-parts":[[2026,1,1]],"date-time":"2026-01-01T00:00:00Z","timestamp":1767225600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"name":"Primary Children\u2019s Hospital Foundation","award":["Early Career Development Award"],"award-info":[{"award-number":["Early Career Development Award"]}]},{"DOI":"10.13039\/100000069","name":"National Institute of Arthritis and Musculoskeletal and Skin Diseases","doi-asserted-by":"publisher","award":["K23AR079778"],"award-info":[{"award-number":["K23AR079778"]}],"id":[{"id":"10.13039\/100000069","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000069","name":"National Institute of Arthritis and Musculoskeletal and Skin Diseases","doi-asserted-by":"publisher","award":["K23AR079778"],"award-info":[{"award-number":["K23AR079778"]}],"id":[{"id":"10.13039\/100000069","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["MDM Policy &amp; Practice"],"published-print":{"date-parts":[[2026,1]]},"abstract":"<jats:p>\n                    <jats:bold>Background.<\/jats:bold>\n                    Shared decision making (SDM) is a promising but poorly understood approach toward improving care for children with medical complexity. The objective of this study is to assess the quality of SDM using self-reported and observer-based measures in pediatric orthopedic clinic visits for neuromuscular scoliosis (NMS) surgical treatment decisions.\n                    <jats:bold>Methods.<\/jats:bold>\n                    We recruited 18 children with NMS at \u22658\u2009y old, a Cobb angle of \u226550\u00b0, and no prior spine surgery at a quaternary children\u2019s hospital; their caregivers; and spine surgeons (\n                    <jats:italic toggle=\"yes\">n<\/jats:italic>\n                    \u2009=\u20093). We video-recorded visits and administered postencounter surveys to assess SDM quality via the DEEP-SDM coding scheme and SDM-Q-9 (parent) and SDM-Q-Doc (provider) validated survey measures (0 =\n                    <jats:italic toggle=\"yes\">poor-quality<\/jats:italic>\n                    to 100 =\n                    <jats:italic toggle=\"yes\">high-quality SDM<\/jats:italic>\n                    ). DEEP-SDM consists of 11 binary variables measuring whether a behavior occurred. We used convergent mixed methods to triangulate DEEP-SDM with survey outcomes and calculated caregiver-provider interrater reliability via prevalence-adjusted and bias-adjusted kappa for survey outcomes.\n                    <jats:bold>Results.<\/jats:bold>\n                    Only 1 child-caregiver-provider triad met all DEEP-SDM criteria (Cohen\u2019s kappa\u2009=\u20090.78). All visits discussed treatment rationale, provider preferences, and caregiver understanding. Few visits assessed patient self-efficacy (4\/18) and defined treatment options (8\/18). Providers led most conversations except for those around caregiver preferences\/values and caregiver understanding. Median (interquartile range) SDM-Q-9 and SDM-Q-Doc scores were 75.6 (66.7\u201391.6) and 80 (72.6\u201381.7), respectively. However, interrater reliability was poor for many items, including clarifying a need for decision making and eliciting caregiver preferences for decision involvement, both with kappa\u2009=\u20090 (confidence interval 0\u20130.35).\n                    <jats:bold>Conclusions.<\/jats:bold>\n                    In NMS treatment decisions, providers could more actively elicit parent preferences\/values and self-efficacy. The poor caregiver\u2013provider interrater reliability of SDM measures suggests current levels of SDM may be insufficient.\n                  <\/jats:p>\n                  <jats:sec>\n                    <jats:title>Highlights<\/jats:title>\n                    <jats:list list-type=\"bullet\">\n                      <jats:list-item>\n                        <jats:p>Both observer- and self-rated measures overestimate and inadequately capture the quality of shared decision making for children with medical complexity.<\/jats:p>\n                      <\/jats:list-item>\n                      <jats:list-item>\n                        <jats:p>Better provider-driven elicitation of family preferences and values is needed.<\/jats:p>\n                      <\/jats:list-item>\n                      <jats:list-item>\n                        <jats:p>Assessment of decisional self-efficacy is often missed.<\/jats:p>\n                      <\/jats:list-item>\n                    <\/jats:list>\n                  <\/jats:sec>","DOI":"10.1177\/23814683261422234","type":"journal-article","created":{"date-parts":[[2026,2,23]],"date-time":"2026-02-23T11:52:22Z","timestamp":1771847542000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["Divergence in Perceptions of Shared Decision Making in Pediatric Neuromuscular Scoliosis"],"prefix":"10.1177","volume":"11","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-9964-7984","authenticated-orcid":false,"given":"Jody L.","family":"Lin","sequence":"first","affiliation":[{"name":"Division of Hospital Medicine, Department of Pediatrics, University of Utah School of Medicine, Salt Lake City, UT, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7177-0198","authenticated-orcid":false,"given":"Angela","family":"Zhu","sequence":"additional","affiliation":[{"name":"Division of Hospital Medicine, Department of Pediatrics, University of Utah School of Medicine, Salt Lake City, UT, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8491-3672","authenticated-orcid":false,"given":"Marla L.","family":"Clayman","sequence":"additional","affiliation":[{"name":"Center for Health Optimization and Implementation Research (CHOIR), VA Bedford Healthcare System, Bedford, MA, USA"},{"name":"Department of Population and Quantitative Health Sciences, UMass Chan School of Medicine, Worcester, MA, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2668-9080","authenticated-orcid":false,"given":"Kimberly A.","family":"Kaphingst","sequence":"additional","affiliation":[{"name":"Department of Communication and Huntsman Cancer Institute, University of Utah, Salt Lake City, UT, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kaleb G.","family":"Eppich","sequence":"additional","affiliation":[{"name":"Division of Epidemiology, Department of Internal Medicine, University of Utah, Salt Lake City, UT, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Greg","family":"Stoddard","sequence":"additional","affiliation":[{"name":"Study Design and Biostatistics Center, University of Utah, Salt Lake City, UT, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lindsay","family":"Andras","sequence":"additional","affiliation":[{"name":"Jackie and Gene Autry Children\u2019s Orthopedic Center, Children\u2019s Hospital Los Angeles, Los Angeles, CA, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Unni G.","family":"Narayanan","sequence":"additional","affiliation":[{"name":"Orthopaedic Surgery, Rehabilitation Sciences, Institute of Health Policy Management &amp; 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