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

J Neurol. 2022 May;269(5):2750-2760. doi: 10.1007/s00415-021-10938-3. Epub 2022 Jan 24.

Abstract

Background: 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.

Keywords: Co-morbidity; Mental health; Neurodevelopment; Physical health; Psychotropics.

Publication types

  • Multicenter Study

MeSH terms

  • Adult
  • Autism Spectrum Disorder* / epidemiology
  • Cohort Studies
  • Epilepsy* / complications
  • Epilepsy* / drug therapy
  • Epilepsy* / epidemiology
  • Female
  • Humans
  • Intellectual Disability* / complications
  • Intellectual Disability* / epidemiology
  • Male
  • Multimorbidity
  • Polypharmacy
  • Retrospective Studies
  • Seizures / drug therapy
  • Sudden Unexpected Death in Epilepsy*