Authors :
Danielle Andrade, MD, MSc, FRCPC – Institute of Medical Science, University of Toronto
Nathalie Jette, MSc, MD, FRCPC – Department of Clinical Neurosciences, University of Calgary, Canada
Ilakkiah Chandran, PhD (c) – University of Toronto, University Health Network
Puja Patel, MD – Associate Professor, Director, Child Neurology Outpatient Services, Isabelle Rapin Division of Child Neurology, Saul R Korey Department of Neurology,Montefiore Medical Center, Albert Einstein College of Medicine
Guido Rubboli, MD – Institute of Clinical Medicine, University of Copenhagen, Copenhagen, Denmark
J. Helen Cross, M.B., Ch.B., PhD – University College London NIHR BRC Great Ormond Street Institute of Child Health
Dana Craiu, MD, PhD – Professor of Pediatric Neurology, "Carol Davila" University of Medicine, Pediatric Neurology Clinic, Al Obregia Hospital
Chong Tin Tan, MD – University of Malaysia
Edward Kija, MD – Muhimbili University of Health and Allied Sciences (MUHAS) and Muhimbili National Hospital
Eva Fung, MB ChB, FRCPCH, FHKAM (Paed), FHKCPaed – Department of Pediatrics, Faculty of Medicine, The Chinese University of Hong Kong, HKSAR, China
Tiziana Granata, MD – Fondazione IRCCS Istituto Neurologico Carlo Besta, Dipartimento di Neuroscienze Pediatriche, Child Neuropsychiatry Unit - Epilepsy Center, Milan, Italy.
Hassan Hosny, MD – Department of Neurology, Kasr Al-Ainy Faculty of Medicine, Cario University, Cario, Egypt
Marco Mula, MD, PhD, FRCP, FEAN – St George's University Hospitals NHS Foundation Trust, London, United Kingdom
Kate Riney, MB, BCh, BAO, PhD – Neurosciences Unit, Queensland Children’s Hospital, South Brisbane, QLD, Australia; University of Queensland, Brisbane, QLD, Australia
Renée Shellhaas, MD, MS – Washington University in St. Louis
Maria Siddiqui, MD – University of Alberta
Presenting Author: Quratulain Zulfiqar Ali, MD, MSc (c) – University of Toronto, University Health Network
Julien Hebert, MD, PhD – University Health Network/University of Toronto
Paula Texeira Marques, MD – McMaster University
Bronte Kerrigan, MSc – University of Toronto, University Health Network
Caihong Ji, MD – Adult Genetic Epilepsy (AGE) Program, University of Toronto, Toronto, Canada
Kette Valente, MD – University of São Paulo (FMUSP)
Jaime Carrizosa, MD – Pediatric Neurology Service, Pediatric Department, University of Antioquia, Mapeo Genético Research Group, Colombia
Rima Nabbout, MD, PhD – Reference Centre for Rare Epilepsies, Necker Enfants Malades Hospital, APHP, Member of the European Reference Network (ERN) EpiCARE; Institut Imagine; Université Paris Cité
Rationale:
Each year, approximately 1.1 million young people with epilepsy transition from pediatric (PHS) to adult healthcare systems (AHS). Often, this shift is a one-time transfer based solely on age, regardless of disease complexity, leading to care disruptions and uncertainty for patients, caregivers, and clinicians. In contrast, transition refers to a planned process that considers medical, psychosocial, and vocational needs. Recognizing this, the International League Against Epilepsy (ILAE) formed the Transition in Care Taskforce (TTF), uniting pediatric and adult neurologists and researchers worldwide to explore challenges and opportunities in epilepsy care transition.
Methods:
Building on past studies and ILAE Transition Workshops (2014, 2016, 2018), the TTF developed a 50-item questionnaire to evaluate provider perspectives across six domains: 1) availability of epilepsy transition programs, 2) current practices, 3) influence of comorbidities/treatments on transition age, 4) education gaps, 5) barriers to effective transition, and 6) improvement strategies. With support from YES-ILAE, the survey was translated into eight languages and distributed globally. Fisher’s Exact Test assessed differences by practitioner type, country income level (per World Bank), and region. Multivariate logistic regression examined associations while adjusting for confounders. Due to limited regional data, countries were grouped as Global North (GN) or Global South (GS), based on 2025 World Population Review.
Results:
A total of 316 respondents from 59 countries participated. Of these, 54% were adult neurologists and 78% practiced in high-income countries. Notably, 59% reported that their country lacked a formal epilepsy transition program. Respondents from the Global South were significantly less familiar with transition strategies compared to those from the Global North. Common barriers included lack of multidisciplinary teams, adapted clinics, funding, training, and adult providers experienced in childhood-onset epilepsies. Key recommendations included integrating transition into neurology curricula, establishing dedicated clinical services and networks for adolescents and young adults, implementing joint pediatric-adult consultations, and developing national transition guidelines—with the latter receiving the highest consensus.
Conclusions:
This global survey underscores widespread awareness of the need for structured, holistic care for youth with childhood-onset epilepsy. However, regional disparities, resource limitations, and poorly coordinated provider roles continue to impede successful transition. Addressing these gaps through education, infrastructure, and policy will be crucial to improving outcomes and continuity of care for this vulnerable population.
Funding: None