Autism with co-occurring epilepsy care pathway in Europe.
Autistic Disorder
/ complications
Epilepsy
/ complications
Quality of Life
Italy
Spain
United Kingdom
Caregivers
Critical Pathways
Anticonvulsants
/ therapeutic use
Evidence-Based Medicine
Humans
Infant, Newborn
Infant
Child, Preschool
Child
Adolescent
Electroencephalography
Intellectual Disability
/ complications
Male
Female
autism
co-occurring epilepsy
harmonized guidance
policy recommendations
screening/diagnosis
treatment
Journal
European psychiatry : the journal of the Association of European Psychiatrists
ISSN: 1778-3585
Titre abrégé: Eur Psychiatry
Pays: England
ID NLM: 9111820
Informations de publication
Date de publication:
20 07 2023
20 07 2023
Historique:
medline:
15
8
2023
pubmed:
20
7
2023
entrez:
20
7
2023
Statut:
epublish
Résumé
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. 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. 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. 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.
Sections du résumé
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.
Identifiants
pubmed: 37470323
doi: 10.1192/j.eurpsy.2023.2426
pii: S0924933823024264
pmc: PMC10486251
doi:
Substances chimiques
Anticonvulsants
0
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
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