Epilepsy in adults with intellectual disabilities: prevalence, associations and service implications

Abstract

Statement of the problem: The prevalence of epilepsy in people with an intellectual disability (ID) is apparently higher than in the general population. The outlook for individuals with both epilepsy and ID depends on the presence of any associated conditions. However, there have been few epidemiological studies of the prevalence of epilepsy and associated problems within a representative adult ID population to inform the development of policy.

Method: This was a population-based prevalence study using the Leicestershire Learning Disability Register. Prevalence was estimated from the number of individuals with reported epilepsy identified from structured home interviews with carers. Associations with epilepsy were investigated for a range of defined physical, mental and skill attributes. Logistic regression was done with and without adjustment for age, sex and level of understanding to identify specific and holistic links respectively.

Results: The prevalence of epilepsy was 26%. Among those with epilepsy, 68% experienced seizures despite anti-epileptic medication. Epilepsy showed a significant association with low levels of understanding. Specific morbid associations included wetting (adjusted odds ratio 2.7), soiling (2.2), walking (2.5), daily living skills (1.6), poor speech (2.2), lack of empathy (1.5), mood swings (1.5), being uncooperative (1.6), seeking attention (1.7) and disturbing others at night (1.9). Holistic associations included a wider range of physical and mental problems and global skills deficits.

Conclusions: The high prevalence, associated morbidities and global skills deficits make epilepsy care for adults with ID important and complex. Specialist epilepsy services for this population need a multidisciplinary skills mix.