282 - Understanding the Care Needs and Experiences of Adults with Spinal Muscular Atrophy and Defining The Transition of Teenagers with SMA to a Multi-disciplinary Adult Program: The TTEEN SMA Study
Student McMaster University Michael G. DeGroote School of Medicine Milton, Ontario, Canada
Background: Spinal muscular atrophy (SMA) is a neuromuscular disorder that results in motor function deterioration and respiratory related morbidity and mortality. While there is presently no cure for SMA, new disease modifying therapies have led to increasing numbers of patients with SMA ‘graduating’ out of pediatric care who require longitudinal support from adult providers. However, there is very limited literature about the challenges of transitioning from pediatric to adult care for patients with SMA. Objective: The purpose of this study is to use qualitative research methodology to explore adult SMA patient experiences regarding their transition from pediatric care to adult care, and to explore the lived experience of SMA including accessibility, accommodations, and financial burden in daily life. Design/Methods: This is a qualitative methods study conducted at The Hospital for Sick Children, Sunnybrook Health Sciences Centre, and Westpark Healthcare Center, Toronto Canada. Individuals with SMA were recruited purposively if they had already transitioned to the adult healthcare system and were able to communicate verbally in English. Demographic, medical, and psychosocial data was collected at study entry and was analyzed to convey sample characteristics and contextualize findings alongside the qualitative results. We conducted semi-structured interviews via Zoom videoconferencing which were audio recorded, transcribed verbatim, coded, and the de-identified. Interviews were conducted until thematic saturation was reached. An inductive, four-step content analysis was employed via NVivo software to identify, code, and categorize important meanings and predominant themes from the text. Results: A total of 20 individuals (10 males, 10 females) with SMA Type 2 (n=8) & SMA Type 3 (n=12) participated in this study. There were 3 emerging themes and several subthemes: (1) need for increased transition preparation from healthcare teams (2) lack of a centralized ‘landing pad' for adult SMA care (3) inequities in access to disease-modifying therapies (variable regulatory approvals, prohibitively expensive therapies, insufficient infrastructure).
Conclusion(s): Study findings demonstrate fragmented care for adult SMA patients during their transition from pediatric to adult care and a desire for a more comprehensive, collaborative and integrated care approach for adults. These experiences of adults with SMA can inform the development of structured, phased transition programs for patient with SMA including the development of an adult multi-disciplinary clinic. This study is funded by MD Canada, Biogen and Roche.
