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SLEEP 2026 | Improving the transition to adult sleep care for young people with neuromuscular disorders
Umakanth Katwa, MD, Boston Children’s Hospital, Boston, MA, discusses the challenges of transitioning young people with neuromuscular disorders and sleep-disordered breathing from pediatric to adult sleep medicine services. He highlights the importance of multidisciplinary care, coordinated transition planning, and addressing the complex medical, psychological, and social needs of these patients to ensure continuity of care. This interview took place at the 40th annual meeting of the Associated Professional Sleep Societies (APSS) in Baltimore, MD.
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Transcript
Children with neuromuscular disorders did not survive much longer. Many survived only up to 20 or 25 and many never saw adult specialists as there was not much treatment. Recently, with the advent of a lot of genetic therapies and other molecular therapies, these children are surviving into adulthood. So, hence, there is a greater need for transition. Number one, a lot of adult providers, particularly from a pulmonary and sleep background, don’t have enough understanding of childhood neuromuscular or congenital neuromuscular disorders and their unique needs...
Children with neuromuscular disorders did not survive much longer. Many survived only up to 20 or 25 and many never saw adult specialists as there was not much treatment. Recently, with the advent of a lot of genetic therapies and other molecular therapies, these children are surviving into adulthood. So, hence, there is a greater need for transition. Number one, a lot of adult providers, particularly from a pulmonary and sleep background, don’t have enough understanding of childhood neuromuscular or congenital neuromuscular disorders and their unique needs. Number two, the care, which was much more family-centric, now becomes much more adult-centric, so that transition can be challenging. So, many children’s hospitals or care for younger children have a much more multidisciplinary approach, and when they transition to other programs, some of those programs may lack that kind of approach, so there can be a huge transition. So, when they are transitioning, they just don’t transition with sleep or pulmonary, they transition the entire ecosystem from one institute to another institute, which has a different way of approaching and being treated more like an adult. Many of these children with neuromuscular disorders are nonverbal or they cannot speak or they have developmental delays. So, still, how you give autonomy versus how much you’re going to involve the parents. Some patients are transitioned to a group home. So, how are you going to communicate with the staff of the group home? These are multiple challenges, not only medical challenges, which we need to make sure that we have those specialists in the adult multidisciplinary programs, their technological needs, their genetic therapy needs, and subsequently their social needs, psychological needs. So, having these, these are the bigger challenges, and also, once they get sick, where they’re going to go, which hospital they’re going to be admitted to, how they’re going to be treated, so these are the challenges, and the transition is not like a one-time process, it’s an active process, which can take several years to completely transfer the care from one institute to another institute.
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