A survey of adult caregivers of people with developmental and epileptic encephalopathies: A long-term care planning needs assessment
Caregivers of adults with DEE are often family members, including adult siblings. Caregivers/families may benefit from receiving additional support to facilitate future planning of transition to adult care. The healthcare system may require changes to facilitate successful medical transition.
Authors
- Laurie Bailey
- Jennifer S. Griffin (ORCID: https://orcid.org/0000-0003-2366-2384)
- Tracy Dixon‐Salazar (ORCID: https://orcid.org/0000-0002-7801-1741)
- Michael Scott Perry (ORCID: https://orcid.org/0000-0002-1825-846X)
- Danielle Molinari Andrade (ORCID: https://orcid.org/0000-0003-0953-2698)
- Mary Anne Meskis (ORCID: https://orcid.org/0000-0003-0748-7774)
- Veronica L. Hood (ORCID: https://orcid.org/0000-0002-1988-4980)
Institutions
- University of Toronto (CA)
- Dravet Syndrome Foundation (US)
- Cook Children's Medical Center (US)
- Lennox-Gastaut Syndrome Foundation (US)
Publication Details
- Journal
- Epilepsy & Behavior
- Published
- 2025-08-30
- DOI
- https://doi.org/10.1016/j.yebeh.2025.110677
- Citations
- 1
- Primary Topic
- Adolescent and Pediatric Healthcare
- Type
- article
- Field-Weighted Citation Impact
- 3.12
Funders
- UCB
- UCB US