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Autism with co-occurring epilepsy care pathway in Europe

Maria A Mendez1, Roberto Canitano2, Bethany Oakley3,4

  • 1Instituto de Investigación Sanitaria Gregorio Marañón, Hospital General Universitario Gregorio Marañón, Madrid, Spain.

European Psychiatry : the Journal of the Association of European Psychiatrists
|July 20, 2023
PubMed

Insights

Autism and epilepsy co-occur frequently, impacting quality of life. This study reveals significant gaps in care pathways and screening for autistic children with epilepsy across Europe, necessitating policy harmonization.

Area of Science:

  • Neurodevelopmental disorders
  • Neurology
  • Public Health

Background:

  • Autism spectrum disorder (ASD) and epilepsy frequently co-occur, significantly affecting patient well-being and family quality of life.
  • Co-occurring epilepsy in autistic individuals is linked to reduced quality of life and increased premature mortality.
  • Limited research exists on the care pathway for autistic children with co-occurring epilepsy in Europe.

Purpose of the Study:

  • To analyze the care pathway for autistic children with epilepsy in Italy, Spain, and the UK.
  • To identify barriers to timely epilepsy screening and treatment for autistic children.
  • To understand the perspectives of caregivers, the autistic community, and healthcare professionals.

Main Methods:

  • Survey of caregivers for autistic children aged 0-18 years across Italy, Spain, and the UK.
  • Analysis of the care pathway from the viewpoints of caregivers, autistic individuals, and professionals.
  • Identification of systemic barriers in epilepsy screening and management for autistic children.

Main Results:

  • A lack of systematic epilepsy screening for all autistic children was observed across the studied countries.
  • Inadequate treatment for co-occurring epilepsy and inappropriate use of antiepileptic drugs were identified.
  • A significant challenge is the absence of harmonized, evidence-based guidelines for managing autism with co-occurring epilepsy.

Conclusions:

  • The care pathway for autism with co-occurring epilepsy exhibits heterogeneity and significant gaps.
  • Caregivers face substantial challenges in ensuring timely epilepsy screening, diagnosis, and management for autistic children.
  • Policy harmonization across Europe is crucial to improve care experiences and quality of life for autistic individuals and their families.
Abstract

Keywords:
autismco-occurring epilepsyharmonized guidancepolicy recommendationsscreening/diagnosistreatment

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