title: Self-management interventions for epilepsy in people with intellectual disabilities: A scoping review.
abstract: OBJECTIVE
  People with intellectual disabilities (ID) experience higher incidences of chronic health conditions, poorer health outcomes, and increased risk of premature death. Epilepsy is 20 times more common in people with ID than in the general population. It tends to be more difficult to diagnose, more severe, and more difficult to treat. Improving epilepsy self-management in this group is advocated in guidelines for best practice. However, few self-management interventions exist, and a robust examination of their effectiveness is missing. Our aim was to identify existing self-management interventions for epilepsy in people with ID and to analyze their impact.
  
  
  METHODS
  A scoping review using Arksey and O'Malley's framework was conducted. Medline, EMBASE, CINAHL, PsycInfo, OpenSIGLE, the Cochrane Database of Systematic Reviews, and Web of Science were searched from inception until June 2015. Using a piloted charting tool, selected articles were thematically analyzed.
  
  
  RESULTS
  An initial search identified 570 articles, of which five met the inclusion criteria. Pilot and randomized controlled feasibility study findings suggest that self-management interventions targeted at people with ID are acceptable to this population, improve epilepsy-related knowledge, improve seizure frequency, and show potential to improve quality of life. A randomised controlled trial of a self-management intervention is currently underway.
  
  
  CONCLUSIONS
  Studies evaluating self-management interventions for people with epilepsy and ID are sparse. Our findings demonstrate the potential for self-management interventions to improve outcomes in this population. Controlled studies with comparable measures and longer follow-ups are needed to rigorously assess the impact of self-management interventions on this patient population.
authors.affiliation: The Dartmouth Institute for Health Policy & Clinical Practice, Dartmouth College, Lebanon, NH USA.
authors.forename: Michelle
authors.initials: M
authors.lastname: Dannenberg
authors.affiliation: Department of Psychology, University of Hertfordshire Higher Education Corporation, UK.
authors.forename: Silvana E
authors.initials: SE
authors.lastname: Mengoni
authors.affiliation: Institute for Practice, Interdisciplinary Research and Enterprise (INSPIRE), University of West London, UK.
authors.forename: Bob
authors.initials: B
authors.lastname: Gates
authors.affiliation: The Dartmouth Institute for Health Policy & Clinical Practice, Dartmouth College, Lebanon, NH USA; Department of Psychology, University of Hertfordshire Higher Education Corporation, UK. Electronic address: durand.marieanne@gmail.com.
authors.forename: Marie-Anne
authors.initials: MA
authors.lastname: Durand
mesh_terms: D004827:Epilepsy / Q000150:complications / Q000175:diagnosis / Q000628:therapy; D006801:Humans; D008607:Intellectual Disability / Q000150:complications / Q000175:diagnosis / Q000628:therapy; D016032:Randomized Controlled Trials as Topic; D012648:Self Care
keywords: Epilepsy; Intellectual disabilities; Intervention; Scoping review; Self-management