{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,12]],"date-time":"2026-06-12T21:27:20Z","timestamp":1781299640045,"version":"3.54.1"},"reference-count":31,"publisher":"Public Library of Science (PLoS)","issue":"1","license":[{"start":{"date-parts":[[2025,1,14]],"date-time":"2025-01-14T00:00:00Z","timestamp":1736812800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["www.plosone.org"],"crossmark-restriction":false},"short-container-title":["PLoS ONE"],"abstract":"<jats:p>For individuals with Duchenne or Becker muscular dystrophy (DMD and BMD, respectively), transitioning to adulthood presents significant challenges. Although considerable attention has been given to facilitating medical transitions due to the complexity of these conditions, less focus has been placed on other aspects of the transition, such as achieving independence. This study assessed the transition needs of people with DMD or BMD, exploring various domains including health, education, employment, living arrangements, transportation, daily activities, and independent personal life. Men with DMD or BMD participated in this cross-sectional study. Transition to adulthood was assessed using Transition Readiness Assessment for Young Adults with DMD. The questionnaire evaluates transitions in health care, education and employment, housing and transportation, activities of daily living, and independent life and autonomy. Factors associated with and predicting transition to adulthood were evaluated using Spearman\u2019s correlations and multiple regression analysis. Forty-two people with DMD or BMD (mean age: 24.3\u00b15.3) participated in this study. The transition domains in which most participants needed help were education and employment (52.5%) and activities of daily living (57.0%). Transition needs that stood out included palliative care (66.6%), employment and education support (76.1%), social worker consultation for housing assistance (76.1%), and assistive device consultation (64.2%). Mobility and breathing function did not correlate with transition level. Number of siblings positively correlated with and predicted most transition domains. Older age predicted only education and employment status. In conclusion, the analysis showed that the most problematic transition domains among people with DMD or BMD were activities of daily living and education and employment. In most transition domains, help needed did not decrease with age and was not affected by function. However, adolescents and adults with more siblings typically reported being more ready to transit to adult life.<\/jats:p>","DOI":"10.1371\/journal.pone.0317006","type":"journal-article","created":{"date-parts":[[2025,1,14]],"date-time":"2025-01-14T18:31:52Z","timestamp":1736879512000},"page":"e0317006","update-policy":"https:\/\/doi.org\/10.1371\/journal.pone.corrections_policy","source":"Crossref","is-referenced-by-count":2,"title":["Navigating adulthood: Exploring the transition needs of adolescents and young adults affected by Duchenne or Becker muscular dystrophy"],"prefix":"10.1371","volume":"20","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0714-4798","authenticated-orcid":true,"given":"Sharon","family":"Barak","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Shirley","family":"Ackerman Laufer","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michal","family":"Gudinsky Elyashiv","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sharon","family":"Rubinstein-Shatz","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rama","family":"Davidson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tali","family":"Kaplan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"340","published-online":{"date-parts":[[2025,1,14]]},"reference":[{"key":"pone.0317006.ref001","article-title":"Emerging adulthood as a critical stage in the life course","author":"D Wood","year":"2017","journal-title":"In: Handbook of Life Course Health Development"},{"key":"pone.0317006.ref002","article-title":"Conceptions of the transition to adulthood among emerging adults in American ethnic groups.","author":"JJ Arnett","year":"2003","journal-title":"New Dir Child Adolesc Dev."},{"key":"pone.0317006.ref003","first-page":"53","article-title":"Duchenne and Becker muscular dystrophy in adolescents: current perspectives.","volume":"9","author":"JG Andrews","year":"2018","journal-title":"Adolesc Health Med Ther."},{"key":"pone.0317006.ref004","doi-asserted-by":"crossref","DOI":"10.1016\/j.pcl.2019.09.002","article-title":"Pediatric Neuromuscular Disorders.","volume":"67","author":"C Michel","year":"2020","journal-title":"Pediatric Clinics of North America."},{"issue":"6 Pt 2","key":"pone.0317006.ref005","first-page":"1304","article-title":"A consensus statement on health care transitions for young adults with special health care needs.","volume":"110","author":"American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine","year":"2002","journal-title":"Pediatrics"},{"issue":"3","key":"pone.0317006.ref006","article-title":"Role Attainment in Emerging Adulthood: Subjective Evaluation by Male Adolescents and Adults with Duchenne and Becker Muscular Dystrophy.","volume":"9","author":"HL Peay","year":"2022","journal-title":"J Neuromuscul Dis."},{"key":"pone.0317006.ref007","doi-asserted-by":"crossref","DOI":"10.1016\/j.jsmc.2020.08.011","article-title":"Lifetime Care of Duchenne Muscular Dystrophy.","volume":"15","author":"EW MacKintosh","year":"2020","journal-title":"Sleep Medicine Clinics"},{"issue":"9","key":"pone.0317006.ref008","doi-asserted-by":"crossref","first-page":"426","DOI":"10.3390\/medicina56090426","article-title":"Transition from Childhood to Adulthood in Patients with Duchenne Muscular Dystrophy.","volume":"56","author":"E Wasilewska","year":"2020","journal-title":"Medicina (B Aires)."},{"issue":"6","key":"pone.0317006.ref009","doi-asserted-by":"crossref","first-page":"959","DOI":"10.3390\/children10060959","article-title":"The Importance of Implementing a Transition Strategy for Patients with Muscular Dystrophy: From Child to Adult\u2014Insights from a Tertiary Centre for Rare Neurological Diseases.","volume":"10","author":"M Lupu","year":"2023","journal-title":"Children."},{"key":"pone.0317006.ref010","doi-asserted-by":"crossref","DOI":"10.1016\/j.neubiorev.2022.104648","article-title":"Cognitive profile and neuropsychiatric disorders in Becker muscular dystrophy: A systematic review of literature.","volume":"137","author":"A Ferrero","year":"2022","journal-title":"Neuroscience and Biobehavioral Reviews"},{"key":"pone.0317006.ref011","first-page":"142","article-title":"A transition toolkit for Duchenne muscular dystrophy","author":"CJ Trout","year":"2018","journal-title":"Pediatrics"},{"key":"pone.0317006.ref012","article-title":"Diagnosis and management of Duchenne muscular dystrophy, part 3: primary care, emergency management, psychosocial care, and transitions of care across the lifespan.","volume":"17","author":"DJ Birnkrant","year":"2018","journal-title":"The Lancet Neurology"},{"issue":"3","key":"pone.0317006.ref013","article-title":"Investigation of four different normality tests in terms of type 1 error rate and power under different distributions.","volume":"36","author":"D \u00d6ztuna","year":"2006","journal-title":"Turk J Med Sci."},{"key":"pone.0317006.ref014","first-page":"4","volume-title":"Scale Development Theory and Applications (Fourth Edition).","author":"RF DeVellis","year":"2016"},{"key":"pone.0317006.ref015","article-title":"Paul Mallery with. SPSS for Windows Step by Step A Simple Guide and Reference Fourth Edition (11.0 update) Answers to Selected Exercises","volume":"63","author":"D George","year":"2003","journal-title":"A simple guide and reference"},{"key":"pone.0317006.ref016","doi-asserted-by":"crossref","DOI":"10.1016\/j.ncl.2014.05.002","article-title":"Duchenne and becker muscular dystrophies.","volume":"32","author":"KM Flanigan","year":"2014","journal-title":"Neurologic Clinics."},{"key":"pone.0317006.ref017","author":"N Gazit","year":"2006","journal-title":"A system that supports independent living of the physically disabled in the community"},{"key":"pone.0317006.ref018","article-title":"The Quality of Life of the Patients Under Palliative Care: The Features of Appropriate Assessment Tools and the Impact of Early Integration of Palliative Care.","author":"T. Antony Thaniyath","year":"2019","journal-title":"In: Palliative Care."},{"key":"pone.0317006.ref019","article-title":"Recommendations for a national plan for palliative care and end-of-life situations.","author":"Israeli Ministry of Health, JDC I, Brookdyle Institute.","year":"2016","journal-title":"Israel"},{"issue":"4","key":"pone.0317006.ref020","doi-asserted-by":"crossref","first-page":"277","DOI":"10.1177\/0008417419832466","article-title":"Meaningful occupations of young adults with muscular dystrophy and other neuromuscular disorders","volume":"86","author":"S Lindsay","year":"2019","journal-title":"Canadian Journal of Occupational Therapy"},{"issue":"1","key":"pone.0317006.ref021","first-page":"1","article-title":"Personal Autonomy and Disability.","volume":"13","author":"L. Krhutov\u00e1","year":"2017","journal-title":"Review of Disability Studies: An International Journal."},{"issue":"3","key":"pone.0317006.ref022","doi-asserted-by":"crossref","DOI":"10.1016\/j.nmd.2019.01.010","article-title":"Powered standing wheelchairs promote independence, health and community involvement in adolescents with Duchenne muscular dystrophy","volume":"29","author":"N Vorster","year":"2019","journal-title":"Neuromuscular Disorders"},{"issue":"1","key":"pone.0317006.ref023","doi-asserted-by":"crossref","DOI":"10.16993\/sjdr.21","article-title":"Autonomy and people with intellectual disabilities who require more intensive support","volume":"20","author":"G Stef\u00e1nsd\u00f3ttir","year":"2018","journal-title":"Scandinavian Journal of Disability Research"},{"key":"pone.0317006.ref024","author":"Kol Zchot","year":"2023","journal-title":"Hiring foreign caregiver"},{"key":"pone.0317006.ref025","unstructured":"Sheba Medical Center. https:\/\/www.milbat.org.il\/professional-consulting-services\/. 2023. Assistive technology."},{"key":"pone.0317006.ref026","article-title":"Duchenne muscular dystrophy: assistive technology and preparing for employment","volume":"m758","author":"AO Frank","year":"2020","journal-title":"BMJ"},{"key":"pone.0317006.ref027","article-title":"A review of factors influencing participation in social and community activities for wheelchair users.","volume":"11","author":"EM Smith","year":"2016","journal-title":"Disability and Rehabilitation: Assistive Technology"},{"key":"pone.0317006.ref028","volume-title":"Living With Muscular Dystrophy: Sexual Education [Doctoral dissertation].","author":"L. Beers","year":"2018"},{"issue":"8","key":"pone.0317006.ref029","doi-asserted-by":"crossref","first-page":"1064","DOI":"10.1016\/j.apmr.2007.04.018","article-title":"What Do We Really Know About the Transition to Adult-Centered Health Care? A Focus on Cerebral Palsy and Spina Bifida","volume":"88","author":"JA Binks","year":"2007","journal-title":"Arch Phys Med Rehabil"},{"issue":"2","key":"pone.0317006.ref030","doi-asserted-by":"crossref","DOI":"10.1007\/s10826-011-9471-2","article-title":"Adjustment of Siblings of Children with Mental Health Problems: Behaviour, Self-Concept, Quality of Life and Family Functioning.","volume":"21","author":"RA Barnett","year":"2012","journal-title":"J Child Fam Stud."},{"issue":"3","key":"pone.0317006.ref031","doi-asserted-by":"crossref","first-page":"41","DOI":"10.9790\/0837-1734145","article-title":"Transition to Adulthood for Youth with Disability: Issues for the Disabled Child and Family","volume":"17","author":"S. Pandey","year":"2013","journal-title":"IOSR Journal Of Humanities And Social Science"}],"container-title":["PLOS ONE"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0317006","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,1,14]],"date-time":"2025-01-14T18:32:03Z","timestamp":1736879523000},"score":1,"resource":{"primary":{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0317006"}},"subtitle":[],"editor":[{"given":"Mainak","family":"Bardhan","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"editor"}]}],"short-title":[],"issued":{"date-parts":[[2025,1,14]]},"references-count":31,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2025,1,14]]}},"URL":"https:\/\/doi.org\/10.1371\/journal.pone.0317006","relation":{},"ISSN":["1932-6203"],"issn-type":[{"value":"1932-6203","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,1,14]]}}}