Restricted accessResearch articleFirst published online 2025
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
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.
Flotats-BastardasMHahnA. New therapeutics options for pediatric neuromuscular disorders. Front Pediatr.2020;8:583877:1–10. DOI: 10.3389/fped.2020.583877
2.
OnofriATanHLCherchiC, et al.Transition to adult care in young people with neuromuscular disease on non-invasive ventilation. Ital J Pediatr.2019;45(1):1–8. DOI: 10.1186/s13052-019-0677-z
3.
AndrewsJGWahlRA. Duchenne and Becker muscular dystrophy in adolescents: current perspectives. Adolesc Health Med Ther.2018;9:53–63. DOI: 10.2147/AHMT.S125739
4.
ManzurAYKinaliMMuntoniF. Update on the management of Duchenne muscular dystrophy. Arch Dis Child.2008;93(11):986–990. DOI: 10.1136/adc.2007.118141
5.
YamaguchiMSuzukiM. Becoming a back-up carer: Parenting sons with Duchenne muscular dystrophy transitioning into adulthood. Neuromuscul Disord.2015;25(1):85–93. DOI: 10.1016/j.nmd.2014.09.001
6.
ColvinMKPoyskyJKinnettK, et al.Psychosocial management of the patient with Duchenne muscular dystrophy. Pediatrics. 2018;142(Supplement_2):S99–S109. DOI: 10.1542/peds.2018-0333L
7.
SabharwalR. The link between stress disorders and autonomic dysfunction in muscular dystrophy. Front Physiol.2014;5(25):1–6. DOI: 10.3389/fphys.2014.00025
AccogliGFerranteCFanizzaI, et al.Neuromuscular disorders and transition from pediatric to adult care in a multidisciplinary perspective: a narrative review of the scientific evidence and current debate. Acta Myol.2022;41(4):188–200. DOI: 10.36185/2532-1900-083
10.
TroutCJCaseLEClemensPR, et al.A transition toolkit for Duchenne muscular dystrophy. Pediatrics. 2018;142(Suppl 2):S110–S117. DOI: 10.1542/peds.2018-0333M
11.
BrownLW. Medical transition from pediatric to adult care in neurology. Pract Neurol.2020;67:56–58.
12.
LindsaySMcAdamLMahendiranT. Enablers and barriers of men with Duchenne muscular dystrophy transitioning from an adult clinic within a pediatric hospital. Disabil Health J.2017;10(1):73–79. DOI: 10.1016/j.dhjo.2016.10.002
13.
TiltonAHde GusmaoCM. Transition from pediatric to adult neurologic care. Continuum (Minneap Minn). 2018;24(1):276–287. DOI: 10.1212/CON.0000000000000570
14.
BlumRW. Transition to adult health care: setting the stage. J Adolesc Health. 1995;17(1):3–5. DOI: 10.1016/1054-139X(95)00073-2
15.
RosenDSBlumRWBrittoM, et al.Transition to adult health care for adolescents and young adults with chronic conditions: position paper of the Society for Adolescent Medicine. J Adolesc Health. 2003;33(4):309–311. DOI: 10.1016/s1054-139x(03)00208-8
16.
ChengPCPanitchHBHansen-FlaschenJ. Transition of patients with neuromuscular disease and chronic ventilator-dependent respiratory failure from pediatric to adult pulmonary care. Paediatr Respir Rev.2020;33:3–8. DOI: 10.1016/j.prrv.2019.03.005
17.
StewartDFreemanMLawM, et al.“The Best Journey to Adult Life” 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; 2009:1–90.
18.
SawickiGSLukens-BullKYinX, et al.Measuring the transition readiness of youth with special healthcare needs: validation of the TRAQ—Transition Readiness Assessment Questionnaire. J Pediatr Psychol.2011;36(2):160–171. DOI: 10.1093/jpepsy/jsp128
19.
LupuMIoghenMPerjocRS, et al.The importance of implementing a transition strategy for patients with muscular dystrophy: from child to adult—insights from a tertiary centre for rare neurological diseases. Children. 2023;10(6):1–12. DOI: 10.3390/children10060959
20.
RutkowskiACossetteSLennoxA, et al.Parent perspectives on neuromuscular disorders: from diagnosis, to parenting and living with, to advance care planning and preparing for death. In: DeconinckNGoemansN, eds. Neuromuscular Disorders in Children: A Multidisciplinary Approach to Management. MacKeith Press; 2019:2–21.
21.
KokoreliasKMLeeTSJBayleyM, et al.I have eight different files at eight different places”: perspectives of youths and their family caregivers on transitioning from pediatric to adult rehabilitation and community services. J Clin Med.2023;12(4):1–15. DOI: 10.3390/jcm1204169
22.
JohnsonKMcBeeMReissJLivingoodWWoodD. TRAQ changes: improving the measurement of transition readiness by the Transition Readiness Assessment Questionnaire. J Pediatr Nurs. 2021;59:188–195. DOI: 10.1016/j.pedn.2021.04.019
23.
NevedalALReardonCMOpra WiderquistMA, et al.Rapid versus traditional qualitative analysis using the Consolidated Framework for Implementation Research (CFIR). Implement Sci.2021;16(1):1–12. DOI: 10.1186/s13012-021-01111-5
24.
BrownLWCamfieldPCapersM, et al.The neurologist's role in supporting transition to adult health care: a consensus statement. Neurology. 2016;87(8):835–840. DOI: 10.1212/WNL.0000000000002965
