Abstract
Advances in knowledge and medical treatment have worked to extend the lifespan for men affected by Becker and Duchenne muscular dystrophy (BMD and DMD). As these individuals continue to surpass life expectancies of the past, there is now a need for them to transfer care from pediatric to adult providers as well as prepare for this next phase of their lives. Despite the increasing occurrence of this, little is known about the transition process and experience from a patient’s perspective. This study sought to gather information about what the lived experience of transition planning is like for men affected by BMD and DMD. Participants were recruited through use of member registries of Parent Project Muscular Dystrophy (PPMD) and the Muscular Dystrophy Association (MDA), along with posts to BMD and DMD Facebook support groups. Participants were asked to complete an online survey designed to collect both quantitative and qualitative data regarding the transition planning process, transition experience, and disease impact on various aspects of life. A total of 62 responses were included in our analysis with 80.6% of respondents having a diagnosis of DMD and the remaining 19.4% being diagnosed with BMD. The majority of participants (75.8%) identified as white/Caucasian and were currently unemployed (74.2%). All males included in the study were between the ages of 18-25 years old with the mean age being 22 years old. Most (71%) respondents reported to have transitioned some aspect of their care from pediatric to adult providers, with the majority of these individuals (81.8%) doing so as result of aging out of their pediatric care. Participants largely agreed with positive statements regarding their transitions, suggesting that most were satisfied with both their new providers and many aspects of the transition process. However, deficits in this process were also acknowledged; namely a lack of additional services available in adult care, aside from those accessible during childhood, and participants’ desire to further discuss transition topics beyond simply changes in medical care. Open-ended responses revealed several emerging themes regarding how the transition process could be better, with some of these being improvements in: communication from providers, anticipatory guidance and planning with providers, and referrals to internal or outside resources. Our study thus demonstrates that, while a number of BMD/DMD patients have transitioned successfully to adulthood, they also have valuable input regarding how processes can be reformed. Moving forward, continued patient feedback regarding transition processes may provide healthcare providers with additional information on targeted areas in need of improvement and insight on ways to better implement changes to better serve this patient population.