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

Authors

Rohit Shankar, Peninsula Medical School
James J. Sun, Barnet, Enfield and Haringey Mental Health NHS Trust
Bhathika Perera, Barnet, Enfield and Haringey Mental Health NHS Trust
William Henley, University of Plymouth
Heather Angus-Leppan, Royal Free London NHS Foundation Trust
Indermeet Sawhney, Hertfordshire Partnership University NHS Foundation Trust
Lance Watkins, Peninsula Medical School
Kiran N. Purandare, Central and North West London NHS Foundation Trust
Mogbeyiteren Eyeoyibo, Kent and Medway NHS and Social Care Partnership Trust
Mark Scheepers, Gloucestershire Health and Care NHS Foundation Trust
Geraldine Lines, Oxleas NHS Foundation Trust
Robert Winterhalder, Oxleas NHS Foundation Trust
Samantha Ashby, SUDEP Action
Silva R De
Jonjo Miller, Barnet, Enfield and Haringey Mental Health NHS Trust
David E. Philpott, Cornwall Partnership NHS Foundation Trust
Chris Ashwin, Cornwall Partnership NHS Foundation Trust
Joshua Howkins, Cornwall Partnership NHS Foundation Trust
Harriet Slater, Swansea Bay University Health Board
David Medhurst, Swansea Bay University Health Board

ORCID

• Rohit Shankar: 0000-0002-1183-6933
• Lance Watkins: 0000-0002-0447-5906

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.

DOI

10.1007/s00415-021-10938-3

Publication Date

2022-01-01

Publication Title

Journal of Neurology

Volume

269

Issue

5

ISSN

0340-5354

Embargo Period

9999-12-31

First Page

2750

Last Page

2760

Recommended Citation

Shankar, R., Sun, J., Perera, B., Henley, W., Angus-Leppan, H., Sawhney, I., Watkins, L., Purandare, K., Eyeoyibo, M., Scheepers, M., Lines, G., Winterhalder, R., Ashby, S., De, S., Miller, J., Philpott, D., Ashwin, C., Howkins, J., Slater, H., & Medhurst, D. (2022) 'Epilepsy related multimorbidity, polypharmacy and risks in adults with intellectual disabilities: a national study', Journal of Neurology, 269(5), pp. 2750-2760. Available at: 10.1007/s00415-021-10938-3