Sleep in children with spinal muscular atrophy and their caregivers: Exploring sleep problems and the need for care

Sleep-disordered breathing in children with spinal muscular atrophy (SMA) is well recognized, yet little is known about everyday, non-respiratory sleep problems and their impact on caregivers. The purpose of this study is to describe the caregiver-reported frequency and type of sleep problems in children with spinal muscular atrophy (SMA) and to evaluate the sleep satisfaction of their child and their own sleep. Furthermore, we assessed the relationship between child and caregiver sleep. Finally, we compared sleep outcomes of children with SMA to that of typically developing (TD) children and their caregivers. Fifty-one children with SMA (age range: 0–16), 287 TD children (age range: 0–16) and their caregivers participated in this cross-sectional, exploratory observational questionnaire study. Night-time waking, snoring, pain or discomfort and daytime fatigue were more common in children with SMA. Caregivers of children with SMA were less satisfied about their child’s and own sleep, and more often reported feeling sleep deprived. We recommend regular assessment of sleep in children with SMA and their families in pediatric healthcare practice. • Children with SMA often struggle with falling asleep and night waking. • Pain, discomfort, and snoring are more common in SMA than in typical peers. • Caregivers of SMA children report more sleep deprivation and less satisfaction. • Child sleep problems are strongly associated with caregiver sleep satisfaction and perceived sleep deprivation. • Routine sleep assessment in SMA is needed to support child and family health.