Caregiver burden and therapeutic needs in Dravet syndrome - A national UK cross-sectional questionnaire study
Families are profoundly impacted by Dravet syndrome. Their experience changes over time as people with Dravet syndrome become older and present with increasing levels of health, cognitive and behavioural comorbidities. Families will benefit from improved communication with health care professionals, psychosocial interventions and better access to social care.
Authors
- Andreas Brunklaus (ORCID: https://orcid.org/0000-0002-7728-6903)
- Galia Wilson (ORCID: https://orcid.org/0009-0001-2703-8880)
- Kirsty Hendry
- Claire Eldred (ORCID: https://orcid.org/0000-0001-8957-9044)
- Sameer M. Zuberi (ORCID: https://orcid.org/0000-0002-4489-4697)
- Anthony Mercier (ORCID: https://orcid.org/0009-0008-0209-8925)
- Liam Dorris (ORCID: https://orcid.org/0000-0002-9502-3154)
- Joseph D. Symonds (ORCID: https://orcid.org/0000-0002-2141-4216)
- Erin Freeman-Jones
- Adriana Swindler
Institutions
- Royal Hospital for Children (GB)
- Synome (United Kingdom) (GB)
Publication Details
- Journal
- European Journal of Paediatric Neurology
- Published
- 2024-10-24
- DOI
- https://doi.org/10.1016/j.ejpn.2024.10.010
- Citations
- 8
- Primary Topic
- Epilepsy research and treatment
- Type
- article
- Field-Weighted Citation Impact
- 3.08
Funders
- Dravet Syndrome UK