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

Ilse Margot van Rijssen1, Sanne Rodenburg1, Mattijs Alsem2

  • 1Center of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center, University Medical Center Utrecht, Utrecht University and De Hoogstraat Rehabilitation, Utrecht, the Netherlands.

Research in Developmental Disabilities
|January 30, 2026
PubMed

Insights

Children with spinal muscular atrophy (SMA) experience more sleep issues like night waking and fatigue, impacting caregiver sleep satisfaction. Regular sleep assessments are recommended for SMA families.

Area of Science:

  • Pediatric Neurology
  • Sleep Medicine
  • Caregiver Health

Background:

  • Sleep-disordered breathing is recognized in children with spinal muscular atrophy (SMA).
  • Non-respiratory sleep problems and their impact on caregivers in SMA are understudied.
  • Understanding these sleep issues is crucial for comprehensive patient care.

Purpose of the Study:

  • To detail caregiver-reported sleep problems in children with SMA.
  • To evaluate sleep satisfaction for children with SMA and their caregivers.
  • To examine the link between child and caregiver sleep and compare outcomes with typically developing children.

Main Methods:

  • Cross-sectional, observational questionnaire study.
  • Involved 51 children with SMA (age 0-16) and their caregivers.
  • Included 287 typically developing (TD) children (age 0-16) and their caregivers for comparison.

Main Results:

  • Children with SMA reported more night waking, snoring, pain, and daytime fatigue.
  • Caregivers of children with SMA reported lower satisfaction with their child's and own sleep.
  • Caregivers of children with SMA more frequently felt sleep-deprived compared to caregivers of TD children.

Conclusions:

  • Children with SMA face significant non-respiratory sleep disturbances.
  • Sleep problems in children with SMA negatively affect caregiver well-being and sleep.
  • Routine sleep assessments for SMA patients and their families are essential in pediatric care.

Keywords:
CaregiversChildrenPediatric healthcareSleepSpinal muscular atrophy

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