Evidence map›Paper›PMID 42172078›Full record

ArticleEpileptic disorders : international epilepsy journal with videotape2026

Holistic management of epilepsy in adults with intellectual development disorders.

Elena Fonseca, Antonella Riva, Samuel López-Maza, Malin Zaddach, Marie-Claire Porter, Ingo Borggraefe, Lance Watkins, Andreas Schulze-Bonhage, Rohit Shankar, Pasquale Striano and 1 more

Abstract read
In one paragraph

Article in Epileptic disorders : international epilepsy journal with videotape, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

11 authors.

Elena FonsecaEpilepsy Unit, Department of Neurology, Universitat Autònoma de Barcelona, Vall d'Hebron University Hospital, Vall d'Hebron Barcelona Hospital Campus, Barcelona, Spain.ORCID https://orcid.org/0000-0002-3895-1237
Antonella RivaDepartment of Neurosciences, Rehabilitation, Ophthalmology, Genetics, Maternal and Child Health (DINOGMI), University of Genoa, Genoa, Italy.ORCID https://orcid.org/0000-0001-9152-5571
Samuel López-MazaEpilepsy Unit, Department of Neurology, Universitat Autònoma de Barcelona, Vall d'Hebron University Hospital, Vall d'Hebron Barcelona Hospital Campus, Barcelona, Spain.ORCID https://orcid.org/0000-0003-3660-2604
Malin ZaddachDivision of Pediatric Neurology, Developmental Medicine and Social Pediatrics, Department of Pediatrics, Dr. Von Hauner Children's Hospital, University Hospital, Ludwig-Maximilians-University, Munich, Germany.ORCID https://orcid.org/0000-0001-7584-0811
Marie-Claire PorterThe Royal London Hospital, Barts NHS Trust, London, UK.ORCID https://orcid.org/0009-0000-1727-7901
Ingo BorggraefeDepartment 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.ORCID https://orcid.org/0000-0002-8484-5945
Lance WatkinsUnit for Development in Intellectual and Developmental Disabilities, University of South Wales, Pontypridd, UK.ORCID https://orcid.org/0000-0002-0447-5906
Andreas Schulze-BonhageEpilepsy Center, University Medical Center-University of Freiburg, Freiburg, Germany.ORCID https://orcid.org/0000-0003-2382-0506
Rohit ShankarCornwall Intellectual Disability Equitable Research (CIDER), Peninsula School of Medicine, University of Plymouth, Plymouth, UK.ORCID https://orcid.org/0000-0002-1183-6933
Pasquale StrianoDepartment of Neurosciences, Rehabilitation, Ophthalmology, Genetics, Maternal and Child Health (DINOGMI), University of Genoa, Genoa, Italy.ORCID https://orcid.org/0000-0002-6065-1476
Lina NashefDepartment of Neurology, King's College Hospital, London, UK.ORCID https://orcid.org/0000-0002-3446-5987

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

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.

Indexed as

AnticonvulsantsEpilepsyHolistic HealthIntellectual DisabilityAdultComorbidityHumansQuality of LifeAnticonvulsantsadultscomorbiditiesepilepsyIDDintellectual development disordersmultidisciplinary caretherapeutic aims

Identifiers

PMID42172078
PMCPMC13499271

What OpenQuestion holds

Textmetadata
LicenceCC BY
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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.