Limited Access to Supportive Therapies and Education for Children with Dravet Syndrome

Strategic Insights -

According to a recent study published in the Epilepsy & Behavior journal, investigators from the Faculty of Medicine State University Sao Paulo report that children with Dravet syndrome, a severe developmental and epileptic encephalopathy, face significant barriers in accessing supportive therapies and inclusive education. The study, which involved a caregiver-reported online survey, revealed that 92.1% of children with Dravet syndrome experience intellectual disability, and 77.3% have motor difficulties. Additionally, 70.8% of children exhibit behavioral problems, and 57.3% have autism spectrum disorder. The researchers emphasized the need for a multidisciplinary, system-integrated approach to address the unmet needs of children with Dravet syndrome and mitigate long-term functional decline.

Key Takeaways:

  • The study highlights the significant burden of non-seizure symptoms (NSS) experienced by children with Dravet syndrome, including intellectual disability (92.1%), communication impairments (87.9%), motor difficulties (77.3%), behavioral problems (70.8%), and autism spectrum disorder (57.3%).
  • Despite the recognized need for rehabilitation, access to physiotherapy or occupational therapy, speech therapy, and behavioral interventions is limited, with only 72.5%, 65.5%, and 51.3% of children receiving these services, respectively.
  • Children with Dravet syndrome also face significant barriers in accessing specialized educational settings, with only 24.2% of participants accessing these settings.
  • The researchers emphasized the need for a multidisciplinary, system-integrated approach to address the unmet needs of children with Dravet syndrome and mitigate long-term functional decline.

Statistics:

  • 139 caregivers participated in the study, with 91.4% being mothers.
  • 140 individuals with Dravet syndrome were included in the study.
  • NSS worsening with sodium channel blockers was reported by 85% of caregivers, with 33.4% describing permanent deterioration.
  • 83.9% of participants had access to the private system (integral or partially) for support services.
  • Weekly sessions of motor rehabilitation, speech therapy, and behavioral therapy were reported by 64.7%, 56%, and 51.3% of participants, respectively.

Sources:

  • What happens after the diagnosis of non-seizure symptoms in Dravet syndrome? A Brazilian national survey. Epilepsy & Behavior, 2025;173:110717.
  • Academic Press Inc Elsevier Science, 525 B St, Ste 1900, San Diego, CA 92101-4495, USA. (Elsevier - www.elsevier.com; Epilepsy & Behavior - www.journals.elsevier.com/epilepsy-and-behavior/)
  • Faculty of Medicine State University Sao Paulo (FMUSP), Sao Paulo, SP, Brazil.