Improving the transition from pediatric to adult epilepsy care: An expert opinion

The transition from pediatric to adult care is a critical and challenging phase for young people with epilepsy (PwE), often marked by disruptions in care continuity, social stigma, isolation, and difficulties in achieving autonomy. These challenges are further compounded in PwE with neurodevelopmental or psychiatric comorbidities, often resulting in suboptimal medical and psychosocial outcomes and a perceived lack of adequate support. Ensuring a structured, effective multiprofessional transition is crucial for preserving quality of life and addressing key issues such as medication adherence, social integration, and life skills, including driving, employment, and relationships. The TRUST project aims to enhance transitional care by promoting a holistic, integrated approach that considers not only medical but also psychological, familial, and social dimensions. A key initiative within the project is the development of targeted questionnaires designed to systematically assess the medical and psychosocial needs of PwE and their caregivers while evaluating the overall effectiveness of the transition process. These tools were informed by insights gathered during five macro-regional meetings across Italy, which facilitated discussions between pediatric and adult neurologists on best practices and challenges in transition care. By combining structured data collection with national expert dialogue, the TRUST project seeks to bridge existing gaps in current transitional care practice. The findings will inform future interventions, with the ultimate goal of embedding these questionnaires into routine clinical practice to ensure a more seamless and individualized transition for PwE into adult care settings. Their implementation has the potential to improve communication between healthcare providers, enhance patient engagement, and contribute to better long-term outcomes in adult epilepsy care.