Evidence map›Paper›PMID 41910243›Full record

SynthesisEpilepsia2026

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

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

Abstract readSystematic Review
In one paragraph

Synthesis in Epilepsia, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

9 authors.

Adam StrzelczykEpilepsy Center Frankfurt Rhine-Main, Department of Neurology, University Medicine Frankfurt, Goethe University Frankfurt, Frankfurt am Main, Germany.ORCID https://orcid.org/0000-0001-6288-9915
Mary Anne MeskisDravet Syndrome Foundation, Cherry Hill, New Jersey, USA.ORCID https://orcid.org/0000-0003-0748-7774
Galia WilsonDravet Syndrome UK, Chesterfield, UK.ORCID https://orcid.org/0009-0001-2703-8880
Bobby JacobUCB, Smyrna, Georgia, USA.
Christoph HelmstaedterDepartment of Epileptology, University Clinic Bonn, Bonn, Germany.ORCID https://orcid.org/0000-0002-6608-6244
Jane von GaudeckerIndiana University, Indianapolis, Indiana, USA.ORCID https://orcid.org/0000-0003-1180-8577
Veronica HoodDravet Syndrome Foundation, Cherry Hill, New Jersey, USA.ORCID https://orcid.org/0000-0002-1988-4980
Ceri HughesDravet Syndrome UK, Chesterfield, UK.
Michael Scott PerryCook Children's Medical Center, Fort Worth, Texas, USA.ORCID https://orcid.org/0000-0002-1825-846X

Funding

UCB
6 · The paper itself

Abstract

objectiveDravet 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.

methodsDatabases (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.

resultsDatabase 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.

Indexed as

CaregiversEpilepsies, MyoclonicMental HealthAnxietyCost of IllnessDepressionFatigueFemaleHumansQuality of LifeStress, Psychologicalanxietydepressionfatigueisolationsleep quality

Identifiers

PMID41910243
PMCPMC13285260

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.