Epilepsy is highly prevalent in people with intellectual disabilities and is associated with increased mortality and high healthcare usage. This systematic review summarizes research on service responses to people with intellectual disabilities and epilepsy.
Studies published from 1990 were identified via electronic searches using Medline, Cinahl, PsycINFO and Web of Science, email requests to researcher networks, and cross-citations. Information extracted from studies was reviewed narratively in relation to identified themes.
Thirty-five studies met the inclusion criteria. Overall study quality was low, with no RCTs or similarly robust intervention study designs. Access to specialists was inconsistent. The importance of proxies and the need for education regarding epilepsy for staff, carers and people with intellectual disabilities were highlighted.
There are no methodologically robust studies on service-related interventions for people with intellectual disabilities and epilepsy. Further research on improving service delivery is required to substantiate findings reported here.