Autism with co-occurring epilepsy care pathway in Europe

Mendez, Maria Andreina, Canitano, Roberto, Oakley, Bethany, Cáceres, Antonia San José, Tinelli, Michela ORCID: 0000-0002-8816-4389, Knapp, Martin ORCID: 0000-0003-1427-0215, Cusack, James, Parellada, Mara, Violland, Pierre, Derk Plas, Jan Roderik, Murphy, Declan, Quoidbach, Vinciane and Arango, Celso (2023) Autism with co-occurring epilepsy care pathway in Europe. European Psychiatry, 66 (1). e61. ISSN 0924-9338

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Abstract

BACKGROUND: Autism and epilepsy often occur together. Epilepsy and other associated conditions have a substantial impact on the well-being of autistic people and their families, reduce quality of life, and increase premature mortality. Despite this, there is a lack of studies investigating the care pathway of autistic children with co-occurring epilepsy in Europe. METHODS: We analyzed the care pathway for autistic children with associated epilepsy in Italy, Spain, and the United Kingdom from the perspective of caregivers (using a survey aimed at caregivers of autistic children 0-18 years old), the autistic community, and professionals, in order to identify major barriers preventing caregivers and autistic children from receiving timely screening and treatment of possible co-occurring epilepsy. RESULTS: Across all three countries, an analysis of the current care pathway showed a lack of systematic screening of epilepsy in all autistic children, lack of treatment of co-occurring epilepsy, and inappropriate use of antiepileptic drugs. A major challenge is the lack of evidence-based harmonized guidelines for autism with co-occurring epilepsy in these countries. CONCLUSIONS: Our findings show both heterogeneity and major gaps in the care pathway for autism with associated epilepsy and the great efforts that caregivers must make for timely screening, diagnosis, and adequate management of epilepsy in autistic children. We call for policy harmonization in Europe in order to improve the experiences and quality of life of autistic people and their families.

Item Type:	Article
Additional Information:	: © 2023 The Author(s)
Divisions:	Health Policy
Subjects:	R Medicine > RC Internal medicine > RC0321 Neuroscience. Biological psychiatry. Neuropsychiatry R Medicine > RA Public aspects of medicine > RA0421 Public health. Hygiene. Preventive Medicine
Date Deposited:	17 Aug 2023 23:24
Last Modified:	18 Nov 2024 18:48
URI:	http://eprints.lse.ac.uk/id/eprint/120013

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