The relationship between clinical presentation and the nature of care in adults with intellectual disability and epilepsy - national comparative cohort study

Sarah Badger; Lance V Watkins; Paul Bassett; Ashok Roy; Mogbeyiteren Eyeoyibo; Indermeet Sawhney; Kiran Purandare; Laurie Wood; Andrea Pugh; Joanne Hammett; Rory Sheehan; Samuel Tromans; Rohit Shankar

doi:10.1192/bjo.2024.45

The relationship between clinical presentation and the nature of care in adults with intellectual disability and epilepsy - national comparative cohort study

BJPsych Open. 2024 Apr 30;10(3):e94. doi: 10.1192/bjo.2024.45.

Authors

Sarah Badger¹, Lance V Watkins², Paul Bassett³, Ashok Roy⁴, Mogbeyiteren Eyeoyibo⁵, Indermeet Sawhney⁶, Kiran Purandare⁷, Laurie Wood⁸, Andrea Pugh⁸, Joanne Hammett⁸, Rory Sheehan⁹, Samuel Tromans¹⁰, Rohit Shankar¹¹

Affiliations

¹ Cornwall Partnership NHS Foundation Trust, Truro, UK.
² University of South Wales, Pontypridd, UK; Cornwall Intellectual Disability Equitable Research (CIDER), University of Plymouth Peninsula School of Medicine, Truro, UK; and Swansea Bay University Health Board, Port Talbot, UK.
³ Statsconsultancy, Amersham, UK.
⁴ Coventry and Warwickshire Partnership NHS Trust, Coventry, UK.
⁵ Kent and Medway NHS and Social Care Partnership Trust, Gillingham, UK.
⁶ Hertfordshire Partnership University NHS Foundation Trust, St Albans, UK.
⁷ Central and Northwest London NHS Foundation Trust, London, UK.
⁸ Swansea Bay University Health Board, Port Talbot, UK.
⁹ Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, UK.
¹⁰ SAPPHIRE Group, Department of Population Health Sciences, University of Leicester, Leicester, UK; and Adult Learning Disability Service, Leicestershire Partnership NHS Trust, Leicester, UK.
¹¹ Cornwall Partnership NHS Foundation Trust, Truro, UK; and Cornwall Intellectual Disability Equitable Research (CIDER), University of Plymouth Peninsula School of Medicine, Truro, UK.

Abstract

Background: A quarter of People with Intellectual Disabilities (PwID) have epilepsy compared with 1% of the general population. Epilepsy in PwID is a bellwether for premature mortality, multimorbidity and polypharmacy. This group depends on their care provider to give relevant information for management, especially epilepsy. There is no research on care status relationship and clinical characteristics of PwID and epilepsy.

Aim: Explore and compare the clinical characteristics of PwID with epilepsy across different care settings.

Method: A retrospective multicentre cohort study across England and Wales collected information on seizure characteristics, intellectual disability severity, neurodevelopmental/biological/psychiatric comorbidities, medication including psychotropics/anti-seizure medication, and care status. Clinical characteristics were compared across different care settings, and those aged over and younger than 40 years.

Results: Of 618 adult PwID across six centres (male:female = 61%:39%), 338 (55%) received professional care whereas 258 (42%) lived with family. Significant differences between the care groups existed in intellectual disability severity (P = 0.01), autism presence (P < 0.001), challenging behaviour (P < 0.001) and comorbid physical conditions (P = 0.008). The two groups did not vary in intellectual disability severity/genetic conditions/seizure type and frequency/psychiatric disorders. The professional care cohort experienced increased polypharmacy (P < 0.001) and antipsychotic/psychotropic use (P < 0.001/P = 0.008).The over-40s cohort had lower autism spectrum disorder (ASD) and attention-deficit hyperactivity disorder (ADHD) comorbidity (P < 0.001/P = 0.007), increased psychiatric comorbidity and challenging behaviour (P < 0.05), physical multimorbidity (P < 0.001), polypharmacy (P < 0.001) and antipsychotic use (P < 0.001) but reduced numbers of seizures (P = 0.007).

Conclusion: PwID and epilepsy over 40 years in professional care have more complex clinical characteristics, increased polypharmacy and antipsychotic prescribing but fewer seizures.

Keywords: Seizures; care setting; comorbidity; intellectual disability; mental health.