The misdiagnosis of epilepsy in people with intellectual disabilities: a systematic review

Purpose: Epilepsy is common in people with intellectual disabilities. Epilepsy can be difficult to diagnose and may be misdiagnosed in around 25% of cases. A systematic review was conducted to explore: (i) How common the misdiagnosis of epilepsy is amongst people with intellectual disabilities. (ii) Reasons for misdiagnosis of epilepsy. (iii) Implications of misdiagnosis. (iv) Improving diagnosis.

Methods: Primary studies and systematic reviews published in the English language between 1998 and 2008 were identified from electronic databases, experts, the Internet, grey literature, and citation tracking. Included studies were critically appraised by team members using the appraisal tools produced by the Critical Appraisal Skills Programme (CASP) at the Public Health Resource Unit, Oxford.

Results: Eight studies were included in the review and critically appraised: six cohort studies and two case studies. Where data was provided in the cohort studies between 32% and 38% of people with intellectual disabilities were diagnosed as not having epilepsy or as having nonepileptic events. The main reason for misdiagnosis was the misinterpretation of behavioural, physiological, syndrome related, medication related or psychological events by parents, paid carers and health professionals.

Conclusions: Those working in epilepsy and intellectual disability services and families must be made more aware of the possibility of misdiagnosis. Future research is needed about the misdiagnosis of epilepsy amongst people with intellectual disabilities and carer knowledge.