Understanding the experiences of adults with spinal muscular atrophy & their transition to an adult program: A mixed methods study
The patient experiences captured in this study demonstrate the lack of transition plans and support for SMA patients when graduating to adult care. With more SMA patients anticipated to survive to adulthood, this problem will be exacerbated. Multi-disciplinary SMA pediatric to adult transition programs are necessary.
Authors
- Zulezwan Ab Malik (ORCID: https://orcid.org/0000-0002-7817-0574)
- Laura C. McAdam (ORCID: https://orcid.org/0000-0002-4650-7232)
- Elisa Nigro (ORCID: https://orcid.org/0000-0002-5925-2507)
- Aaron Izenberg (ORCID: https://orcid.org/0009-0001-5645-711X)
- Jackie Chiang (ORCID: https://orcid.org/0000-0002-7958-5472)
- Reshma Amin (ORCID: https://orcid.org/0000-0002-3032-5434)
- Anu Tandon
- Munazzah Ambreen
- Joseph Munn (ORCID: https://orcid.org/0000-0003-1018-917X)
- Hernán Gonorazky (ORCID: https://orcid.org/0000-0001-8084-8324)
- Robert Varadi
- Craig Dale (ORCID: https://orcid.org/0000-0002-5042-0332)
- Nouma Hammash
- Emily Zaltz
- Amrit Dhindsa
Institutions
- Sunnybrook Health Science Centre (CA)
- University Health Network (CA)
- University of Toronto (CA)
- Hospital for Sick Children (CA)
- Holland Bloorview Kids Rehabilitation Hospital (CA)
- West Park Healthcare Centre (CA)
- SickKids Foundation (CA)
- Institute for Clinical Evaluative Sciences (CA)
Publication Details
- Journal
- Journal of Neuromuscular Diseases
- Published
- 2025-09-15
- DOI
- https://doi.org/10.1177/22143602251377241
- Primary Topic
- Neurogenetic and Muscular Disorders Research
- Type
- article
- Field-Weighted Citation Impact
- 0.00