Authors :
Presenting Author: Danielle Andrade, MD – University of Toronto
Pula 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 Rubbioli, MD – Danish Epilepsy Center, Filadelfia/University of Copenhagen; Helen Cross, MD – UCL GOS Institute of Child Health, UCL-Institute of Child Health; Dana Craiu, MD, Ph.D – Professor of Pediatric Neurology, "Carol Davila" University of Medicine, Pediatric Neurology Clinic, Al Obregia Hospital; Chong Tin Tan, MD – University of Malaya; Quratulain Zulfiqar Ali, MD – Research Associate ll, Adult Genetic Epilepsy (AGE), Neurology, University Health Network, Toronto Western Hospital; Ilakkiah Chandran, BSc, IMS Candidate – Research Assistant, Adult Genetic Epilepsy (AGE), Neurology, Institute of Medical Science, University of Toronto, Toronto Western Hospital; Paula Marques, MD – Toronto Western Hospital; Caihong Ji, MD – University of Toronto, Toronto Western Hospital; Edward Kija, MD – Muhimbili University of Health and Allied Sciences (MUHAS) and Muhimbili National Hospital; Maria Siddiqi, MD – University of Alberta; Jaime Carrizosa, M.D., F.A.C.P., F.I.D.S.A. – ediatric Neurology Service, Pediatric Department, University of Antioquia; Rima Nabbout, MD, PhD – Neurologist, Necker-Enfants Malades Hospital
Rationale: Approximately 1.1 million children with epilepsy become adults every year.
1. Moving from the pediatric to adult health care can be troublesome, and transition guidelines have been suggested, although not implemented in most places. The International League Against Epilepsy (ILAE) has set a Transition from Pediatric to Adult Care Task Force, and their first goal was to review the current situation in different parts of the world.
This study aimed to understand the perspectives and attitudes of healthcare practitioners on the challenges of transitioning epilepsy patients to adult care. By understanding these perspectives, we aim to identify the barriers preventing satisfactory transition while examining the elements needed for successful transitions.
Reference:
1 Fiest KM, Sauro KM, Wiebe S, et al. Prevalence and incidence of epilepsy: A systematic review and meta-analysis of international studies. Neurology 2017; 88:296-303.
Methods: A questionnaire was distributed to practitioners worldwide through ILAE Chapters in eight languages. The responses were then analyzed through descriptive analyses and qualitative summaries.
Results: A total of 184 practitioners from 38 countries completed the questionnaire.
70 practitioners from 25 countries reported not having a transition program in their country.
58% of respondents were adult practitioners and 42% were child practitioners.
54% of respondents stated that transition is initiated by sending documents from patients’ pediatric files.
58% of respondents describe the availability of an adult neurologist with knowledge of the condition positively impacting patient transition.
For patients with epilepsy and intellectual disability (ID):
Both adult (40%) and child (43%) practitioners agreed that the transition age for patients with epilepsy and ID should differ from those without ID.
74% of adult practitioners suggested patients with ID to transition at or before 18 years of age.
88% of child practitioners suggested patients with ID to transition at or after 18 years of age.
The five most common practitioner-perceived barriers to building and sustaining transition programs found were the following: lack of multidisciplinary teams (90%), patients feel attached to the childcare system (89%), absence of adapted adult clinical settings for adults with special needs such as autism, ID, or wheelchair accessibility (87%), lack of financial support for transition programs (84%), and limited education and training for transition in epilepsy (82%).
Respondents also perceived adult practitioners as less comfortable treating childhood epilepsies (66%) and likely not comfortable following patients with complex epilepsies, multiple comorbidities, and previously failed treatments as a barrier to transition (68%).
Conclusions: This ILAE Transition Task Force survey highlights the views of a large number of HCP in 38 countries about transition in epilepsy. It also identifies perceived barriers such as lack of funding, multidisciplinary teams, and accessibility, which can help policymakers target specific issues to make structured transition programs possible.
Funding: None