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Improving the transition from pediatric to adult epilepsy care: An expert opinion
Flavio Villani1, Francesca Bisulli2, Francesca Darra3
1Division of Clinical Neurophysiology and Epilepsy Center, IRCCS Ospedale Policlinico San Martino, Genova, Italy.
Insights
Transitioning young people with epilepsy (PwE) to adult care requires a structured approach. The TRUST project developed tools to assess needs and improve this critical phase for better long-term outcomes.
Area of Science:
- Neurology
- Developmental Psychology
- Healthcare Management
Background:
- Transition from pediatric to adult epilepsy care presents significant challenges for young people, including care discontinuity, stigma, and autonomy issues.
- Comorbidities in young people with epilepsy (PwE) exacerbate medical and psychosocial difficulties, leading to suboptimal outcomes and inadequate support.
- Effective multiprofessional transition is vital for maintaining quality of life and addressing critical areas like medication adherence, social integration, and life skills.
Purpose of the Study:
- To enhance transitional care for young people with epilepsy (PwE) through a holistic, integrated approach.
- To develop and implement targeted questionnaires for assessing medical and psychosocial needs of PwE and caregivers during transition.
- To evaluate the effectiveness of the transition process and inform future clinical practice.
Main Methods:
- The TRUST project involved five macro-regional meetings across Italy with pediatric and adult neurologists to discuss best practices and challenges.
- Development of targeted questionnaires informed by expert dialogue and focused on systematically assessing medical and psychosocial needs.
- Combining structured data collection with national expert input to identify and address gaps in current transitional care.
Main Results:
- Insights from national expert dialogue and macro-regional meetings informed the development of assessment tools.
- The TRUST project established a framework for a more integrated and multiprofessional approach to epilepsy transition care.
- Questionnaires were designed to systematically evaluate the needs of PwE and caregivers and the effectiveness of the transition process.
Conclusions:
- The TRUST project's initiatives aim to bridge existing gaps in transitional care for PwE.
- Implementing the developed questionnaires into routine clinical practice can facilitate a more seamless and individualized transition.
- This approach has the potential to improve healthcare provider communication, patient engagement, and long-term outcomes in adult epilepsy care.
Abstract:
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.
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