A general practice-based prevalence study of epilepsy among adults with intellectual disabilities and of its association with psychiatric disorder, behaviour disturbance and carer stress.
Epilepsy alone does not increase psychiatric or behaviour problems in adults with learning disabilities once ability level is matched.
01Research in Context
What this study did
Doctors visited 23 general practices in one UK county. They screened every adult patient on the learning-disability register.
Each adult with epilepsy was paired with an adult without epilepsy. The pairs had the same IQ range, age, and living situation.
Carers then filled out forms about behaviour problems, psychiatric symptoms, and their own stress levels.
What they found
Eighteen out of every 100 adults with learning disabilities also had epilepsy.
After matching for ability level, the epilepsy group showed no extra behaviour or mental-health problems.
Their carers reported the same stress levels as carers of adults without epilepsy.
How this fits with other research
Roane et al. (2001) saw more behaviour disorders in adults with epilepsy and learning disabilities. The key difference: they did not match for ability level. Once you control for IQ and daily-skills, epilepsy alone adds no new risk.
Bao et al. (2017) pooled studies in severe/profound learning disabilities and found a 70% epilepsy rate. Their group was much more disabled than the present community sample, so higher epilepsy figures are expected.
Busch et al. (2010) added autism to the mix. They showed that epilepsy plus autism does raise behaviour scores. The takeaway: screen for autism when behaviour escalates, not just epilepsy.
Why it matters
You can stop blaming seizures for every behaviour spike. Check the client’s adaptive-skill profile first. If ability level and autism status are stable, look elsewhere for the cause. This saves time, avoids needless medication tweaks, and keeps families from extra worry.
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02At a glance
03Original abstract
BACKGROUND: Although the elevated occurrence of epilepsy in people with intellectual disabilities (ID) is well recognized, the nature of seizures and their association with psychopathology and carer strain are less clearly understood. The aims were to determine the prevalence and features of epilepsy in a community-based population of adults with ID, and to explore whether the presence of epilepsy was associated with greater psychopathology or carer strain. METHODS: Data were collected on the age, gender, place of residence, adaptive and challenging behaviour, social abilities and psychiatric status of 318 adults from 40 general practices, together with the degree of malaise and strain of family carers. For participants with epilepsy, a nurse collected information on seizures, investigations, treatment and carer concerns by interview. Association between epilepsy and psychiatric morbidity, challenging behaviour and caregiver malaise or strain, was explored by comparing those with epilepsy with a comparison group matched on adaptive behaviour. RESULTS: Fifty-eight participants (18%) had epilepsy: 26% were seizure free, but 34% had extremely poorly controlled seizures. Earlier onset and seizure frequency were associated with adaptive behaviour. Carer concerns were related to seizure frequency and a history of injury. There were no significant differences in psychopathology, carer malaise or caregiver strain between the matched epilepsy and non-epilepsy groups. CONCLUSIONS: This study supports the high occurrence and chronicity of epilepsy among people with ID. While psychopathology and carer strain is common within this population, underlying disability-related factors appear to be more important than the presence of epilepsy per se.
Journal of intellectual disability research : JIDR, 2008 · doi:10.1111/j.1365-2788.2007.01025.x