TY - JOUR
AU - E. Fonseca
AU - A. Riva
AU - S. López-Maza
AU - M. Zaddach
AU - M. C. Porter
AU - I. Borggraefe
AU - L. Watkins
AU - A. Schulze-Bonhage
AU - R. Shankar
AU - P. Striano
AU - L. Nashef
A1 - 
AB - This seminar addresses the complexity of the management of epilepsy in adults with intellectual development disorders (IDD), advocating holistic and multidisciplinary care aligned with the learning objectives of the International League Against Epilepsy. Epilepsy is significantly more prevalent in people with IDD, presenting unique diagnostic, therapeutic, and psychosocial challenges. Accurate diagnosis is hampered by limitations in communication, necessitating reliance on caregivers' observations. In adults with IDD and epilepsy, utilization of diagnostic tools, e.g., video electroencephalograph (EEG) monitoring, is helpful but can be challenging. Management requires careful consideration of cognitive and behavioral comorbidities and the effects of antiseizure medications (ASMs) on cognitive function and quality of life (QoL). Personalized treatment plans should balance seizure control against ASM side effects, prioritizing therapeutic goals aligned with individual patient needs. Effective multidisciplinary care involves primary care physicians, neurologists, psychiatrists, psychologists, social workers, therapists, and specialized nursing staff. Transition periods, including from pediatric to adult care, and from the family home to professional care, represent critical phases requiring structured planning and collaboration among health and social-care providers, patients, and caregivers. Current gaps in integrated care include the need for targeted therapeutic approaches, more tailored cognitive and behavioral assessment tools, guidelines for managing pregnancy and hormonal considerations, management of commonly associated comorbidities, including non-epileptic paroxysmal events, and reduction of preventable morbidity and mortality, including sudden death. This seminar emphasizes the necessity of addressing these gaps to advance care standards, promote research, and ultimately improve patient outcomes. The manuscript includes two anonymized illustrative clinical case studies. Practical recommendations include systematic reassessment of underlying etiologies, including genetic counseling and testing, reviewing the electroclinical diagnosis, careful selection and titration of ASMs to minimize cognitive and behavioral impacts, and structured transition. Addressing these challenges and implementing an integrated care model could significantly enhance QoL for adults living with IDD and epilepsy.
AD - Epilepsy Unit, Department of Neurology, Universitat Autònoma de Barcelona, Vall d'Hebron University Hospital, Vall d'Hebron Barcelona Hospital Campus, Barcelona, Spain.; Research Group on Status Epilepticus and Acute Seizures, Vall d'Hebron Research Institute (VHIR), Vall d'Hebron University Hospital, Vall d'Hebron Hospital Campus, Barcelona, Spain.; Department of Neurosciences, Rehabilitation, Ophthalmology, Genetics, Maternal and Child Health (DINOGMI), University of Genoa, Genoa, Italy.; IRCCS Istituto Giannina Gaslini, Full Member of ERN EpiCARE, Genoa, Italy.; Division of Pediatric Neurology, Developmental Medicine and Social Pediatrics, Department of Pediatrics, Dr. Von Hauner Children's Hospital, University Hospital, Ludwig-Maximilians-University, Munich, Germany.; The Royal London Hospital, Barts NHS Trust, London, UK.; Department of Pediatrics, Division of Pediatric Neurology, Comprehensive Epilepsy Center, MUC iSPZ Hauner - Munich University Center for Children with Medical and Developmental Complexity, Dr. von Hauner Children's Hospital, Munich, Germany.; Unit for Development in Intellectual and Developmental Disabilities, University of South Wales, Pontypridd, UK.; Swansea Bay University Health Board, Mental Health and Learning Disability Delivery Unit, Llwyneryr Unit, Swansea, UK.; Cornwall Intellectual Disability Equitable Research (CIDER), Peninsula School of Medicine, University of Plymouth, Plymouth, UK.; Epilepsy Center, University Medical Center-University of Freiburg, Freiburg, Germany.; Department of Neurology, King's College Hospital, London, UK.
AN - 42172078
BT - Epileptic Disord
C5 - Healthcare Disparities
DA - 05/2026
DO - 10.1002/epd2.70272
DP - NLM
ET - 20260522
JF - Epileptic Disord
LA - eng
N2 - This seminar addresses the complexity of the management of epilepsy in adults with intellectual development disorders (IDD), advocating holistic and multidisciplinary care aligned with the learning objectives of the International League Against Epilepsy. Epilepsy is significantly more prevalent in people with IDD, presenting unique diagnostic, therapeutic, and psychosocial challenges. Accurate diagnosis is hampered by limitations in communication, necessitating reliance on caregivers' observations. In adults with IDD and epilepsy, utilization of diagnostic tools, e.g., video electroencephalograph (EEG) monitoring, is helpful but can be challenging. Management requires careful consideration of cognitive and behavioral comorbidities and the effects of antiseizure medications (ASMs) on cognitive function and quality of life (QoL). Personalized treatment plans should balance seizure control against ASM side effects, prioritizing therapeutic goals aligned with individual patient needs. Effective multidisciplinary care involves primary care physicians, neurologists, psychiatrists, psychologists, social workers, therapists, and specialized nursing staff. Transition periods, including from pediatric to adult care, and from the family home to professional care, represent critical phases requiring structured planning and collaboration among health and social-care providers, patients, and caregivers. Current gaps in integrated care include the need for targeted therapeutic approaches, more tailored cognitive and behavioral assessment tools, guidelines for managing pregnancy and hormonal considerations, management of commonly associated comorbidities, including non-epileptic paroxysmal events, and reduction of preventable morbidity and mortality, including sudden death. This seminar emphasizes the necessity of addressing these gaps to advance care standards, promote research, and ultimately improve patient outcomes. The manuscript includes two anonymized illustrative clinical case studies. Practical recommendations include systematic reassessment of underlying etiologies, including genetic counseling and testing, reviewing the electroclinical diagnosis, careful selection and titration of ASMs to minimize cognitive and behavioral impacts, and structured transition. Addressing these challenges and implementing an integrated care model could significantly enhance QoL for adults living with IDD and epilepsy.
PY - 2026
SN - 1294-9361
ST - Seminars in epileptology: Holistic management of epilepsy in adults with intellectual development disorders
T1 - Seminars in epileptology: Holistic management of epilepsy in adults with intellectual development disorders
T2 - Epileptic Disord
TI - Seminars in epileptology: Holistic management of epilepsy in adults with intellectual development disorders
U1 - Healthcare Disparities
U3 - 10.1002/epd2.70272
VO - 1294-9361
Y1 - 2026
ER -