{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,29]],"date-time":"2026-05-29T14:14:07Z","timestamp":1780064047660,"version":"3.54.0"},"reference-count":24,"publisher":"SAGE Publications","issue":"6","license":[{"start":{"date-parts":[[2025,11,18]],"date-time":"2025-11-18T00:00:00Z","timestamp":1763424000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["J Child Neurol"],"published-print":{"date-parts":[[2026,7]]},"abstract":"<jats:p>Recent medical advances are allowing more youth with neuromuscular disorders to live into adulthood, thus increasing the necessity to transition youth from pediatric to adult medical care. Examining salient factors and processes for successful transition planning from pediatric to adult medical care in youth with neuromuscular disorders is a nascent field of study. The current study aims to address the key quality improvement question of identifying factors to consider when planning for transition by exploring the views of youth with neuromuscular disorders, caregivers, and providers within a multidisciplinary clinic regarding current care transition practices via quantitative and qualitative approaches. Both qualitative and quantitative results highlighted patient-endorsed importance of transition and emphasized the need for future tailored supports to facilitate gleaning skills for transition. Overall, this study offers valuable insights from patients, parents, and providers about challenges and best practices involved in transition planning for young adults with neuromuscular disorders.<\/jats:p>","DOI":"10.1177\/08830738251392425","type":"journal-article","created":{"date-parts":[[2025,11,18]],"date-time":"2025-11-18T18:25:48Z","timestamp":1763490348000},"page":"829-839","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["Are We Trying to Put Wallpaper on the Gap Within the Hospital? A Quality Improvement Examination of the Transition Planning Process in Youth with Neuromuscular Disorders"],"prefix":"10.1177","volume":"41","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0263-8350","authenticated-orcid":false,"given":"Emily C.","family":"Mariotti","sequence":"first","affiliation":[{"name":"Children's Hospital of Philadelphia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7154-5919","authenticated-orcid":false,"given":"Lindsey H.","family":"Rosenthal","sequence":"additional","affiliation":[{"name":"Yale University, School of Medicine"},{"name":"Current affiliation: Department of Psychology, Arizona State University, Tempe, AZ, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Barbara","family":"Storch","sequence":"additional","affiliation":[{"name":"Yale University, School of Medicine"},{"name":"Current affiliation: Department of Child and Adolescent Psychiatry, Hassenfeld Children''s Hospital at NYU Langone, New York, NY, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Susan","family":"Dalmoura","sequence":"additional","affiliation":[{"name":"Yale New Haven Hospital"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cristian","family":"Ionita","sequence":"additional","affiliation":[{"name":"Yale University, School of Medicine"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4051-4260","authenticated-orcid":false,"given":"Areti","family":"Vassilopoulos","sequence":"additional","affiliation":[{"name":"Yale University, School of Medicine"},{"name":"Yale University, School of Medicine"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2025,11,18]]},"reference":[{"key":"e_1_3_3_2_2","doi-asserted-by":"publisher","DOI":"10.3389\/fped.2020.583877"},{"key":"e_1_3_3_3_2","doi-asserted-by":"publisher","DOI":"10.1186\/s13052-019-0677-z"},{"key":"e_1_3_3_4_2","doi-asserted-by":"publisher","DOI":"10.2147\/AHMT.S125739"},{"key":"e_1_3_3_5_2","doi-asserted-by":"publisher","DOI":"10.1136\/adc.2007.118141"},{"key":"e_1_3_3_6_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.nmd.2014.09.001"},{"key":"e_1_3_3_7_2","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2018-0333L"},{"key":"e_1_3_3_8_2","doi-asserted-by":"publisher","DOI":"10.3389\/fphys.2014.00025"},{"key":"e_1_3_3_9_2","unstructured":"US Food and Drug Administration (FDA). FDA approves first gene therapy for treatment of certain patients with Duchenne muscular dystrophy. Accessed June 22 2023. https:\/\/www.fda.gov\/news-events\/press-announcements\/fda-approves-first-gene-therapy-treatment-certain-patients-duchenne-muscular-dystrophy#:\u223c:text=Today%2C%20the%20U.S.%20Food%20and preventing%20treatment%20with%20this%20therapy."},{"key":"e_1_3_3_10_2","doi-asserted-by":"publisher","DOI":"10.36185\/2532-1900-083"},{"key":"e_1_3_3_11_2","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2018-0333M"},{"key":"e_1_3_3_12_2","first-page":"56","article-title":"Medical transition from pediatric to adult care in neurology","volume":"67","author":"Brown LW","year":"2020","unstructured":"Brown LW. Medical transition from pediatric to adult care in neurology. Pract Neurol. 2020;67:56\u201358.","journal-title":"Pract Neurol."},{"key":"e_1_3_3_13_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.dhjo.2016.10.002"},{"key":"e_1_3_3_14_2","doi-asserted-by":"publisher","DOI":"10.1212\/CON.0000000000000570"},{"key":"e_1_3_3_15_2","doi-asserted-by":"publisher","DOI":"10.1016\/1054-139X(95)00073-2"},{"key":"e_1_3_3_16_2","doi-asserted-by":"publisher","DOI":"10.1016\/s1054-139x(03)00208-8"},{"key":"e_1_3_3_17_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.prrv.2019.03.005"},{"key":"e_1_3_3_18_2","first-page":"1","volume-title":"\u201cThe Best Journey to Adult Life\u201d for Youth With Disabilities: An Evidence-Based Model and Best Practice Guidelines for the Transition to Adulthood for Youth With DisabilitiesCanChild Centre for Childhood Disability Research","author":"Stewart D","year":"2009","unstructured":"Stewart D, Freeman M, Law M, et al. \u201cThe Best Journey to Adult Life\u201d for Youth With Disabilities: An Evidence-Based Model and Best Practice Guidelines for the Transition to Adulthood for Youth With Disabilities. CanChild Centre for Childhood Disability Research, Institute for Applied Health Sciences, McMaster University; 2009:1\u201390."},{"key":"e_1_3_3_19_2","doi-asserted-by":"publisher","DOI":"10.1093\/jpepsy\/jsp128"},{"key":"e_1_3_3_20_2","doi-asserted-by":"publisher","DOI":"10.3390\/children10060959"},{"key":"e_1_3_3_21_2","first-page":"2","volume-title":"Neuromuscular Disorders in Children: A Multidisciplinary Approach to Management","author":"Rutkowski A","year":"2019","unstructured":"Rutkowski A, Cossette S, Lennox A, et al. Parent perspectives on neuromuscular disorders: from diagnosis, to parenting and living with, to advance care planning and preparing for death. In: Deconinck N, Goemans N, eds. Neuromuscular Disorders in Children: A Multidisciplinary Approach to Management. MacKeith Press; 2019:2\u201321."},{"key":"e_1_3_3_22_2","doi-asserted-by":"publisher","DOI":"10.3390\/jcm1204169"},{"key":"e_1_3_3_23_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.pedn.2021.04.019"},{"key":"e_1_3_3_24_2","doi-asserted-by":"publisher","DOI":"10.1186\/s13012-021-01111-5"},{"key":"e_1_3_3_25_2","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0000000000002965"}],"container-title":["Journal of Child Neurology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/08830738251392425","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/08830738251392425","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/08830738251392425","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,5,29]],"date-time":"2026-05-29T13:54:43Z","timestamp":1780062883000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/08830738251392425"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,11,18]]},"references-count":24,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2026,7]]}},"alternative-id":["10.1177\/08830738251392425"],"URL":"https:\/\/doi.org\/10.1177\/08830738251392425","relation":{},"ISSN":["0883-0738","1708-8283"],"issn-type":[{"value":"0883-0738","type":"print"},{"value":"1708-8283","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,11,18]]}}}