ORCID
- Lance Watkins: 0000-0002-0447-5906
- Rohit Shankar: 0000-0002-1183-6933
Document Type
Article
Abstract
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.
DOI Link
Publication Date
2026-05-22
Publication Title
Epileptic Disorders
Volume
28
Issue
2
ISSN
1294-9361
Acceptance Date
2026-04-29
Deposit Date
2026-05-26
Funding
The manuscript was written by the authors with medical writing and reference consolidation provided by Rebecca Hurst, PhD, supported by Joelle Buck, PhD, on behalf of Syneos Health, London, UK, and editorial support provided by Chiara Lee, of Syneos Health, London, UK. This support was funded by Jazz Pharmaceuticals in accordance with Good Publication Practice (GPP) 2022 guidelines ( http://www.ismpp.org/gpp3 ). Jazz Pharmaceuticals also reviewed the manuscript but had no input into the writing of the manuscript. The content of this manuscript and the decision to submit it for publication in was made by the authors. Epileptic Disorders
Additional Links
Keywords
adults, Comorbidities, Epilepsy, IDD, Intellectual Development Disorder, Multidisciplinary Care, therapeutic aims, epilepsy, comorbidities, intellectual development disorders, multidisciplinary care, Comorbidity, Humans, Anticonvulsants/therapeutic use, Holistic Health, Epilepsy/therapy, Intellectual Disability/complications, Quality of Life, Adult
Creative Commons License

This work is licensed under a Creative Commons Attribution 4.0 International License.
First Page
981
Last Page
1006
Recommended Citation
Fonseca, E., Riva, A., López‐Maza, S., Zaddach, M., Porter, M., Borggraefe, I., Watkins, L., Schulze‐Bonhage, A., Shankar, R., Striano, P., & Nashef, L. (2026) 'Holistic management of epilepsy in adults with intellectual development disorders', Epileptic Disorders, 28(2), pp. 981-1006. Available at: 10.1002/epd2.70272
