Develop a epilepsy health action plan
For people with IDD and epilepsy, make a comprehensive epilepsy health action plan involving patients, family, and other caregivers.208 Follow guidelines for diagnosis and management of epilepsy 208, 210, 211 and tools for periodic reviews.212
Strongly Recommended
Empirical Experiential
Epilepsy occurs in about 1 in 5 people with IDD compared with 1 in 100 people without an IDD.206 The prevalence increases with the severity of IDD. It contributes to early mortality.207 It can be difficult to diagnose.208, 209 Choice of medications and importance of regular monitoring are the same as for those in the general population.208
Review antiepileptic medications frequently
Review this plan at least annually. Review more frequently (eg, every 3 to 6mo) the efficacy and safety of antiepileptic medications, including any drug reactions adversely affecting cognitive functioning or behaviour.210
Strongly Recommended
Empirical Expert
Epilepsy occurs in about 1 in 5 people with IDD compared with 1 in 100 people without an IDD.206 The prevalence increases with the severity of IDD. It contributes to early mortality.207 It can be difficult to diagnose.208, 209 Choice of medications and importance of regular monitoring are the same as for those in the general population.208
Epilepsy Action Website
The UK based Epilepsy Action website includes a primary care resource pack developed to help family physician practices to implement services for epilepsy patients in line with national guidance. This resource pack includes a patient care plan template
Seizure Tools
Various Seizure tools, developed by the Developmental Disabilities Primary Care Initiative (2011), include a seizure care plan template, monitoring sheets, and tips for caregivers.
206. Robertson J, Hatton C, Emerson E, Baines S. Prevalence of epilepsy among people with intellectual disabilities: A systematic review. Seizure. 2015;29:46-62.
207. Robertson J, Hatton C, Emerson E, Baines S. Mortality in people with intellectual disabilities and epilepsy: A systematic review. Seizure. 2015;29:123-33.
208. National Institute for Health and Clinical Excellence NICE. The epilepsies: The diagnosis and management of the epilepsies in adults and children in primary and secondary care – clinical guideline [CG137]. London, UK: National Clinical Guideline Centre NCGC; 2012.
209. Chapman M, Iddon P, Atkinson K, Brodie C, Mitchell D, Parvin G, et al. The misdiagnosis of epilepsy in people with intellectual disabilities: A systematic review. Seizure. 2011;20(2):101-6.
210. Branford D, Bhaumik S, Kiani R. Chapter 4: Epilepsy. In: Bhaumik S, Branford D, Barrett M, Gangadharan SK, editors. The Frith prescribing guidelines for people with intellectual disability. 3rd ed. Chichester, West Sussex ; Hoboken, NJ: John Wiley & Sons Inc.; 2015.
211. Whitten E, Griffiths A. Implementing epilepsy guidelines within a learning disability service. Seizure. 2007;16(6):471-8.
212. Epilepsy Action. Epilepsy: A resource pack for primary care [Website]. Epilepsy Action. 2017. Accessed March 21 2017.