People with epilepsy and intellectual disability: More than a sum of two conditions

Francesca M Snoeijen-Schouwenaars; Charlotte Young; Charles Rowe; Jans S van Ool; Helenius J Schelhaas; Rohit Shankar

doi:10.1016/j.yebeh.2021.108355

People with epilepsy and intellectual disability: More than a sum of two conditions

Epilepsy Behav. 2021 Oct 5:124:108355. doi: 10.1016/j.yebeh.2021.108355. Online ahead of print.

Authors

Francesca M Snoeijen-Schouwenaars¹, Charlotte Young², Charles Rowe², Jans S van Ool¹, Helenius J Schelhaas¹, Rohit Shankar³

Affiliations

¹ Academic Centre for Epileptology Kempenhaeghe, Department of Residential Care, etherlands; Academic Centre for Epileptology Kempenhaeghe, Department of Neurology, Netherlands.
² Cornwall Partnership NHS Foundation Trust, Bodmin, United Kingdom.
³ Cornwall Partnership NHS Foundation Trust, Bodmin, United Kingdom; Cornwall Intellectual Disability Equitable Research (CIDER) University of Plymouth Peninsula Medical School, Truro, United Kingdom. Electronic address: rohit.shankar@plymouth.ac.uk.

PMID: 34624802
DOI: 10.1016/j.yebeh.2021.108355

Abstract

Background: Around 25% of people with Intellectual Disability (PwID) have comorbid epilepsy with seizures in up to two-thirds being drug-resistant. Little is known of the general characteristics and prescribing practices to this population.

Aim: Describe and compare characteristics of two cohorts of PwID and epilepsy in two different countries to inform clinical practice better.

Method: An explorative, retrospective, case-note review in a specialist ID community service in England and in an expert center for PwID and epilepsy in the Netherlands was conducted. Information on ID severity, medical/behavioral/psychiatric/neurodevelopmental/genetic comorbidities, psychotropic, and antiepileptic drugs (AEDs) for each cohort was collected.

Findings: The English cohort consisted of 167 people (98 males; age range 18-73 years; mild/moderate ID- 35%) and the Dutch cohort of 189 people (111 males; age range 18-85 years; mild/moderate ID - 51%). The two cohorts were comparable in their baseline characteristics. The Dutch had higher rates of physical comorbidity, but less mental or behavioral disorders and were more likely to be on anti-psychotic medication. The mean dosages between three most common AEDs prescribed were similar. The most frequently prescribed drug in both centers is valproate. Three-quarters of the Dutch were on three or more AEDs compared to a third in the English cohort.

Conclusions: Structured description of the characteristics, differences, and commonalities of PwID, treatment, and services of both countries is presented. This is the first real-world study to reveal unique characteristics of managing epilepsy for a complex ID population. In particular, it highlights the considerable comorbid psychiatric burden and psychotropic prescribing.

Keywords: Behavioral health; Comorbidity; Mental health; Physical health; Seizures.