Evaluating adult care in Dravet syndrome upon transferring from pediatrics in the U.S.: A caregiver-based survey study.

Autor: Nascimento FA; Department of Neurology, Washington University School of Medicine, St. Louis, MO, USA; Department of Neurology, Massachusetts General Hospital, Boston, MA, USA. Electronic address: fabion@wustl.edu., Hood V; Dravet Syndrome Foundation, Cherry Hill, NJ, USA., Yap SV; Department of Neurology, Massachusetts General Hospital, Boston, MA, USA., Sheikh IS; Department of Neurology, Massachusetts General Hospital, Boston, MA, USA., Anne Meskis M; Dravet Syndrome Foundation, Cherry Hill, NJ, USA., Thiele EA; Department of Neurology, Massachusetts General Hospital, Boston, MA, USA.
Jazyk: angličtina
Zdroj: Epilepsy & behavior : E&B [Epilepsy Behav] 2023 Oct; Vol. 147, pp. 109368. Date of Electronic Publication: 2023 Aug 22.
DOI: 10.1016/j.yebeh.2023.109368
Abstrakt: Patients with Dravet syndrome (DS) and their caregivers must navigate a complex process upon transitioning from pediatric to adult healthcare settings. Our study examines the state of care transfer of patients with DS in the U.S. A 34-question e-survey evaluating patient demographics, clinical features, and details of the transfer process was sent to caregivers of adults with DS (≥18 years old) residing in the U.S. through the Dravet Syndrome Foundation. Forty-six responses were included in the analysis. Twenty-nine patients (n = 29/46) did not undergo transfer of care - mostly because they were still followed by pediatric neurologists/epileptologists (71%), whereas 17 (n = 17/46) underwent transfer of care. Adult neurology/epilepsy teams providing care never/rarely included a multidisciplinary team (71%), addressed patients' self-advocacy capabilities (53%), or legal guardianship/end-of-life decision-making (59%). Adult neurology/epilepsy teams were considered very much attentive/available (63%), attentive and accommodating to patients with behavioral/cognitive issues (50%), and knowledgeable about caring for patients with intellectual disability/behavioral issues (63%), collaborating with caregivers (75%), and DS - especially in adults (50%). Most caregivers (62.5%) rated the transfer process as good, very good, or excellent. Patients with DS and their caregivers would benefit from more accessible transition programs, which would be ideally equipped to deliver care tailored to these patients' needs.
Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have seemed to influence the work reported in this paper.
(Copyright © 2023 The Author(s). Published by Elsevier Inc. All rights reserved.)
Databáze: MEDLINE
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