ArticleOrphanet journal of rare diseases2023
Sleep quality, anxiety, symptoms of depression, and caregiver burden among those caring for patients with Dravet syndrome: a prospective multicenter study in Germany.
Article in Orphanet journal of rare diseases, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers, 3 of them syntheses that pooled it.
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Who cites it
15 citing papers in PubMed, 3 syntheses or guidelines pooled it, 24 citations in OpenAlex.
- Mental health impacts experienced by caregivers of people with Dravet syndrome: A systematic literature review.Epilepsia · 2026Pooled it
- Systematic review of indirect costs to families of children with developmental epileptic encephalopathies.Orphanet journal of rare diseases · 2025Pooled it
- Dravet syndrome: A systematic literature review of the illness burden.Epilepsia open · 2023Pooled it
- Persistent input- and cell-type-specific synaptic alterations in the somatosensory thalamus of Dravet syndrome mice.Journal of neurophysiology · 2026Article
- Caregiver burden and its relationship with mood and insomnia severity in caregivers of stroke patients.Irish journal of medical science · 2026Article
- Psychological impact of being a caregiver to children with infantile neuroaxonal dystrophy.Arquivos de neuro-psiquiatria · 2026Article
- Article
- Quality of Life and Mental Health Among Families Caring for Children with Medical Complexity: A Scoping Review.Healthcare (Basel, Switzerland) · 2026Review
- The relationship between stress, anxiety, and health literacy in parents of children with chronic gastroenterological diseases: a multi-center cross-sectional study.BMC public health · 2025Article
- The Impacts of Caregiving for Patients with X-Linked Retinitis Pigmentosa (XLRP): Findings from the EXPLORE XLRP-2 Study.Advances in therapy · 2025Article
- Review
- The impact of rare diseases on the quality of life in paediatric patients: current status.Frontiers in public health · 2025Review
- Caregiver Burden and Associated Factors Among Informal Caregivers of Hospitalized Elderly Patients in China: A Latent Profile Analysis.Risk management and healthcare policy · 2025Article
- Is caregiver sleep quality an important clinical issue?Sleep and biological rhythms · 2024Article
- Caregiver Burnout in Pediatric Laryngomalacia: The Role of Clinical and Psychological Factors.Cureus · 2023Article
Corrections and comments
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Authors and funding
23 authors at 14 institutions in 3 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThis study measured sleep quality among caregivers of patients with Dravet syndrome (DS) and assessed the impacts of mental health problems and caregiver burden on sleep quality.
methodsThis multicenter, cross-sectional study of patients with DS and their caregivers throughout Germany consisted of a questionnaire and a prospective 4-week diary querying disease characteristics, demographic data, living conditions, nocturnal supervision, and caregivers' work situations. Sleep quality was assessed using the Pittsburgh Sleeping Quality Index (PSQI). The Hospital Anxiety and Depression Scale (HADS) and the Burden Scale for Family Caregivers (BSFC) were used to measure anxiety, symptoms of depression, and caregiver burden.
resultsOur analysis included 108 questionnaires and 82 four-week diaries. Patients with DS were 49.1% male (n = 53), with a mean age of 13.5 ± 10.0 years. Caregivers were 92.6% (n = 100) female, with a mean age of 44.7 ± 10.6 years. The overall mean PSQI score was 8.7 ± 3.5, with 76.9% of participants (n = 83) scoring 6 or higher, indicating abnormal sleep quality. The HADS for anxiety and depression had overall mean scores of 9.3 ± 4.3 and 7.9 ± 3.7, respectively; 61.8% and 50.9% of participants scored above the cutoff value of 8 for anxiety and depression, respectively. Statistical analyses revealed caregiver anxiety levels and patients' sleep disturbances as major factors influencing PSQI scores. The overall mean BSFC score of 41.7 ± 11.7 indicates a moderate burden, with 45.3% of caregivers scoring 42 or higher.
conclusionsSleep quality is severely affected among caregivers of patients with DS, correlating with anxiety, comorbidities, and patients' sleep disturbances. A holistic therapeutic approach should be implemented for patients with DS and their caregivers, focusing on the sleep quality and mental health of caregivers.
trial registrationGerman Clinical Trials Register (DRKS), DRKS00016967. Registered 27 May 2019, http://www.drks.de/DRKS00016967.
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