Epilepsy related multimorbidity, polypharmacy and risks in adults with intellectual disabilities: a national study

Abstract

A quarter of people with Intellectual Disability (ID) in the UK have epilepsy compared to 0.6% in the general population and die much younger. Epilepsy is associated with two-fifths of all deaths with related polypharmacy and multi-morbidity. Epilepsy research on this population has been poor. This study describes real-world clinical and risk characteristics of a large cohort across England and Wales. Methods:A retrospective multi-centre cohort study was conducted. Information on seizure characteristics, ID severity, relevant co-morbidities, psychotropic and antiseizure drugs (ASDs), SUDEP and other risk factors was collected across a year. Results:Of 904 adults across 10 centres (male:female,1•5:1), 320 (35%) had mild ID and 584 (65%) moderate-profound (M/P) ID. The mean age was 39.9 years (SD 15.0). Seizures were more frequent in M/P ID (p <0•001). Over 50% had physical health co-morbidities, more in mild ID (p<0•01). A third had psychiatric co-morbidity and a fifth had an underlying genetic disorder. Autism Spectrum Disorder was seen in over a third (37%). Participants were on median two ASDs and overall, five medications. Over quarter were on anti-psychotics. Over 90% had an epilepsy review in the past year but 25% did not have an epilepsy care plan, particularly those with mild ID (p<0•001). Only 61% had a documented discussion of SUDEP, again less likely with mild ID or their care stakeholders (p<0•001). Conclusions:Significant levels of multi-morbidity, polypharmacy and a lack of systemised approach to treatment and risk exist. Addressing these concerns is essential to reduce premature mortality.

Tackling increased risks in older adults with intellectual disability and epilepsy: Data from a national multicentre cohort study

“…A recent retrospective multi-centre cohort study evaluated the clinical characteristics of people with ID and epilepsy including 904 adults from 10 different sites [5]. From this cohort 45% (n=405) of those included were considered older adults (aged 40 years or over).…”

“…This investigation is a post hoc sub-group analysis of a 10-site multicentre retrospective cohort study of people with ID and epilepsy from across England and Wales. The methodology for the original investigation is published and summarised in Appendix 1 [5]. The STROBE guidelines for cross sectional studies was utilised (supplementary file 1).…”

“…This includes the influence of specific genetic syndromes (e.g., Down's syndrome) on morbidity as people age. People with ID and epilepsy have high rates of multimorbidity (two or more chronic conditions) specifically mental and emotional disorders, neurodevelopmental disorders and neurological conditions [4,5]. This is associated with a higher prevalence of polypharmacy (5 or more regular medicines) [6,7].…”

“…This sub-analysis is derived from a pragmatic retrospective real-world study and is thus not without limitations. The specific limitations are outlined in the main study [5]. The most prominent of these include no seizure outcome data, lack of historical data on medication use and lack of a validated psychiatric diagnosis.…”

Bidirectionality of antiseizure and antipsychotic treatment: A population-based study

“…In a recent British study addressing polypharmacy in a selected cohort of people with intellectual disability and epilepsy, 27% used APDs, but only 7% had a comorbid diagnosis of psychosis. This suggests not only a higher prevalence of psychosis in people with intellectual disability and epilepsy, but also a higher proportion of APD treatment for non-psychotic conditions, such as unspecific challenging behaviors [52]. However, patients in the present population-based study were strictly selected by reimbursement codes for epilepsy and psychosis, aiming to minimize this potential confounder.…”