A Transition Toolkit for Duchenne Muscular Dystrophy

Abstract

The care of individuals with Duchenne muscular dystrophy (DMD) now extends into adulthood. Childhood to adulthood transition planning is an important aspect of care, affecting health outcomes as well as other important aspects of adult life. In this article, we address transition planning as it relates to DMD health care, education, steps toward vocations, personal care, accessing the home and community, and the importance of relationships with others. Because of the complex, disabling, and progressive nature of DMD, coordinated, well-timed planning is critical to ensure that all components of transition are accomplished. In this article, we introduce the DMD Transition Toolkit. The toolkit is designed to help assess readiness for transition, track progress toward transition goals, and provide a template for documenting key elements of medical care, medical equipment, and services. The transition readiness assessment for young adults with DMD is used to gauge readiness for adult health care and living practices. Consistent with the 2018 DMD Care Considerations, the transition checklist for young adults with DMD is a comprehensive list to be considered, discussed, and planned for during transition. The medical summary for young adults with DMD can be used by a provider or individuals with DMD to communicate details of their health plan, provider contacts, and medical equipment needs. It can be used in transition handoffs, when adding new providers, or when informing new nursing agencies or personal care attendants. It could also be useful in urgent care settings by providing baseline information about the individual with DMD.