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.