Autism with co-occurring epilepsy care pathway in Europe

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.