Sleep problems beyond sleep-disordered breathing are more common in children with SMA than typically developing children, and caregivers of children with SMA report lower sleep satisfaction and more frequent sleep deprivation.
Night-time waking was more common in children with SMA compared to typically developing children.
Snoring was reported more frequently in children with SMA than in typically developing children.
Pain or discomfort during sleep was more common in children with SMA than in typically developing children.
Daytime fatigue was more prevalent in children with SMA compared to typically developing children.
Caregivers of children with SMA were less satisfied with both their child's sleep and their own sleep compared to caregivers of typically developing children.
The study assessed the relationship between child sleep and caregiver sleep in the SMA population.
The authors recommend regular assessment of sleep in children with SMA and their families in pediatric healthcare practice.
This research suggests that children with spinal muscular atrophy (SMA), a rare genetic muscle-weakening disease, experience a range of sleep problems that go beyond the breathing difficulties during sleep that doctors already know about. Compared to children without SMA, children with SMA were more likely to wake during the night, snore, experience pain or discomfort, and feel tired during the day. These findings come from questionnaires completed by caregivers of 51 children with SMA and 287 typically developing children, all between the ages of 0 and 16. The study also found that caring for a child with SMA has a significant impact on caregivers' own sleep. Parents and other caregivers of children with SMA were less satisfied with how well their child slept and how well they themselves slept, and they more often felt sleep deprived compared to caregivers of children without SMA. This points to a cycle where a child's disrupted sleep directly affects the rest and wellbeing of those caring for them. This research suggests that healthcare providers working with children with SMA should regularly ask about sleep — not just breathing-related sleep issues, but all types of sleep problems — and should also check in on how caregivers are coping with their own sleep. Recognizing and addressing these broader sleep challenges could improve quality of life for both children with SMA and their families.
van Rijssen I, Rodenburg S, Alsem M, Hulst R, Gorter J, Lansink I, et al.. (2026). Sleep in children with spinal muscular atrophy and their caregivers: Exploring sleep problems and the need for care.. Research in developmental disabilities. https://doi.org/10.1016/j.ridd.2026.105238