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Factors Associated with Caregiver Sleep Quality Related to Children with Rare Epilepsy Syndromes

Dale C Hesdorffer1, Barbara L Kroner2, Jing Shen1

  • 1Gertrude H. Sergievsky Center and Department of Epidemiology and Statistics, Columbia University, New York, NY.

The Journal of Pediatrics: X
|June 19, 2023
PubMed

Insights

Pediatric sleep issues and seizure monitoring in rare epilepsies significantly worsen caregiver sleep and mental health. Addressing these disturbances is crucial for caregiver well-being.

Area of Science:

  • Neurology
  • Sleep Medicine
  • Caregiver Health

Background:

  • Rare epilepsy syndromes present unique challenges for pediatric patients and their families.
  • Caregiver well-being is often overlooked, yet critical for effective patient management.
  • Sleep disturbances in children with epilepsy can be frequent and impact the entire household.

Purpose of the Study:

  • To investigate the effects of pediatric sleep disturbances and night-time seizure monitoring on caregiver sleep quality and mental health.
  • To identify specific factors related to rare epilepsy syndromes that affect caregivers.
  • To establish associations between child's sleep issues and caregiver outcomes.

Main Methods:

  • A cross-sectional study utilizing caregiver-reported data from the Rare Epilepsy Network.
  • Employed Patient Reported Outcomes Measurement Information System (PROMIS) measures for caregiver outcomes.
  • Logistic regression analysis was used to determine risk factors associated with caregiver sleep quality.

Main Results:

  • Pediatric sleep disturbances (difficulty sleeping, daytime sleepiness, night awakenings, restless sleep) were linked to increased caregiver fatigue, sleep disturbance, and impairment.
  • Caregiver anxiety and depression showed strong associations with fatigue and poor sleep quality.
  • Sharing sleep spaces or using seizure monitoring methods significantly increased caregiver sleep disturbance and fatigue.

Conclusions:

  • Pediatric sleep disturbances and seizure monitoring in rare epilepsies are significant stressors for caregivers.
  • These sleep-related issues contribute to caregiver fatigue and poor sleep quality, potentially exacerbating mental health problems.
  • Interventions targeting pediatric sleep and caregiver support are essential in managing rare epilepsy syndromes.
Abstract

Keywords:
SUDEPcaregivernocturnal monitoringpediatric epilepsysleep

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