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Publications

Journal Article Ahead of print

PubMed: 41910243 DOI: 10.1002/epi.70171

Mental health impacts experienced by caregivers of people with Dravet syndrome: A systematic literature review.

Epilepsia

Authors: Adam Strzelczyk, Mary Anne Meskis, Galia Wilson, Bobby Jacob, Christoph Helmstaedter, Jane von Gaudecker, Veronica Hood, Ceri Hughes, Michael Scott Perry

Affiliations

  • Epilepsy Center Frankfurt Rhine-Main, Department of Neurology, University Medicine Frankfurt, Goethe University Frankfurt, Frankfurt am Main, Germany.
  • Dravet Syndrome Foundation, Cherry Hill, New Jersey, USA.
  • Dravet Syndrome UK, Chesterfield, UK.
  • UCB, Smyrna, Georgia, USA.
  • Department of Epileptology, University Clinic Bonn, Bonn, Germany.
  • Indiana University, Indianapolis, Indiana, USA.
  • Cook Children's Medical Center, Fort Worth, Texas, USA.

Abstract

OBJECTIVE

Dravet syndrome (DS) places tremendous burden on caregivers owing to the extent of required assistance and impact on daily living, as well as the risk to the individual with DS of premature mortality from sudden unexpected death in epilepsy and morbidity associated with nonseizure manifestations. This systematic literature review provides an up-to-date characterization of the mental health impacts experienced by caregivers of people with DS.

METHODS

Databases (1974 to August 29, 2024 in Embase; 1946 to August 29, 2024 in MEDLINE) were searched for records containing keywords relevant to mental health in caregivers of people with DS. The study population comprised caregivers of people with DS with any or no intervention and/or comparator (and excluding pharmacologic interventions affecting caregiver burden-related outcomes) and with mental health outcomes that included depression, anxiety, fatigue, sleep quality, stress, mood, and quality of life scales.

RESULTS

Database searches returned 519 records; 20 published articles were included. Most common were cross-sectional studies, with populations from Asia, Australia, Central/South America, Europe, and North America. Study sample sizes ranged from seven to 256 caregivers of people with DS; most caregivers were female. Depression and anxiety were reported in 11 and 10 articles, respectively; the prevalence of depression and anxiety among caregivers ranged 5%-66% and 5.2%-80%, respectively. Some studies used instruments to assess mental health outcomes; Beck Depression Inventory-II for depressive symptoms and the Hospital Anxiety and Depression Scale for symptoms of anxiety and depression were reported in three and two articles, respectively. Factors potentially associated with mental health including sleep quality, fatigue, and stress were commonly reported, with poor sleep quality and fatigue often linked to nighttime monitoring of people with DS.

SIGNIFICANCE

Physicians should routinely assess the mental health of caregivers of people with DS; future studies should focus on identifying interventions that ease burden on caregivers.

MeSH

Depression, Epilepsy, Sleep, Caregivers, Stress, Physiological, Signs And Symptoms, Fatigue, Records, Mental Health, Dravet Syndrome