Transition of Care in Rare and Complex Epilepsies

Transition from pediatric to adult care is a crucial process for individuals living with chronic neurological disorders, particularly people with epilepsy (PWE). This process becomes even more challenging for young individuals with developmental and epileptic encephalopathies (DEEs) and complex disabilities.

These patients often present with a wide range of phenotypes, including intellectual disability, behavioral challenges, and motor impairments. The level of disability at the point of transition strongly influences the type of care and interventions required. While various models and guidelines for transition exist in neurological conditions, a significant gap remains in the literature and practice specifically addressing rare and complex epilepsies.

In 2024, EpiCARE conducted a survey in collaboration with ePAGs to explore current transition practices across its centers. The survey revealed several key barriers:

• Nearly half of respondents reported a lack of structured transition pathway in their centers.
• Multidisciplinary team involvement is often limited, with inconsistent participation from essential professionals such as psychiatrists and social workers.
• Transition is often initiated late, despite most respondents recommending starting before age 17.
• Clinical transition coordination often relies on informal communication, highlighting the need for standardized protocols.

These findings clearly indicate the absence of a harmonized, multidisciplinary, well-resourced approach to transition in rare and complex epilepsies within Europe.

OBJECTIVES:

• Develop consensus-based recommendations for effective transition in rare and complex epilepsies across EpiCARE centers.
• Identify minimum standards and core components for adaptable transition models for rare and complex epilepsies in Europe.
• Clarify the roles and responsibilities of healthcare professionals involved in the transition process.
• Provide a framework for harmonization and benchmarking across EpiCARE centers.
• Promote knowledge dissemination and raise awareness of the unique challenges in this patient population.

ACTIVITIES:

• Development of a standardized EpiCARE transition protocol, including:
  • A follow-up Delphi consensus study to define best practices.
  • Integration of survey findings and stakeholder feedback.
• Design and validation of EpiCARE-specific tools for evaluating transition outcomes.
• Organization of webinars, case discussions, and collaborative workshops to promote awareness and training.

• Rima Nabbout – Hôpital Necker-Enfants Malades – Paris, France
• Tiziana Granata – IRCCS Istituto Besta – Milan, Italy
• Francesca Ragona – IRCCS Istituto Besta – Milan, Italy
• Francesca Bisulli – IRCCS Istituto delle Scienze Neurologiche – Bologna, Italy
• Guido Rubboli – Danish Epilepsy Centre Filadelfia – Dianalund, Denmark
• Francesca Darra – Verona Hospital – Verona, Italy
• Joseph Toulouse – Lyon Hospital – France
• Irena Bibic & Vedrana Bibic – ePAG, Dravet Sindrom Hrvatska – Split, Croatia

Collaborators:

Ludovica Pasca – PhD student, University of Pavia – Italy

Management Team:

Belen Trebino Harrington