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.
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Data statement
The data that support the findings of this study are available from the corresponding author upon reasonable request.
Change history
05 March 2022
A Correction to this paper has been published: https://doi.org/10.1007/s00415-022-11012-2
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Acknowledgements
Ms Gina Matthews for information governance support. Dr Adaobi Ikwueze for assisting data collection.
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Rohit Shankar has received institutional and research support from LivaNova, UCB, Eisai, Veriton Pharma, Bial, Averelle, UnEEG and GW pharma outside the submitted work. He holds grants from NIHR AI, SBRI and other funding bodies all outside this work. No other author has any declared conflict of interest related to this paper.
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Appendix 1: Rationale for examining mild and moderate-profound ID as two groups [14, 29]:
Appendix 1: Rationale for examining mild and moderate-profound ID as two groups [14, 29]:
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1.
Each of the 3 sub-groups of moderate, severe, and profound ID have a low prevalence (9% moderate, 4% severe, and approximately 2% profound) and together they would combine to form 15% of the total ID population. Taken individually it would be difficult to achieve satisfactory power to deliver meaningful conclusions.
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2.
Moderate, severe, and profound ID are difficult to assess and classify which causes significant issues with accuracy of specific diagnosis of moderate, severe, or profound ID.
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3.
The groups of moderate, severe, and profound ID are defined by qualitatively significantly higher levels impairments. Where people with mild intellectual disability have near independent lives with some or minimal support, those with moderate/severe/profound ID tend to be supported and supervised at all times.
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4.
Impairments such as communication difficulties, making informed choices and needing supervision is similar in the group of people with moderate, severe, and profound intellectual disability, People with mild intellectual disability can make informed choices on most day-to-day matters and can be supported to provide a personal view on medication choice, compliance, and reporting side effects.
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5.
Epilepsy possibly due to disturbed brain function is present in 30—50% of the moderate to Profound ID group as compared to 8–12% in the mild ID population and 0.6−1% in general population.
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Sun, J.J., Perera, B., Henley, W. et al. Epilepsy related multimorbidity, polypharmacy and risks in adults with intellectual disabilities: a national study. J Neurol 269, 2750–2760 (2022). https://doi.org/10.1007/s00415-021-10938-3
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DOI: https://doi.org/10.1007/s00415-021-10938-3