Measurement in pediatric epilepsy self-management: A critical review

Given the paucity of information available regarding self-management, the aims of this paper are to synthesize the literature on factors associated with and measures to assess self-management in pediatric epilepsy.

Inclusion criteria: youth birth to 18 years with a seizure disorder or an epilepsy diagnosis and/or their caregivers, published 1985-2014 in English, and conducted in countries with a very high human development index. The review was conducted in 6 phases: (1) identification of bibliographical search criteria and databases; (2) abstract assessment; (3) full article review; (4) organization of final citations into categories; (5) identification of predictors, potential mediators/moderators, and outcomes associated with self-management factors and categorization of factors as influences, processes, or behaviors across individual, family, community, and health care domains; and (6) critique of self-management instrument studies. Twenty-five studies that evaluated factors associated with self-management were identified. Individual and family-focused factors were the most commonly studied predictors of self-management, with psychosocial care needs and self-efficacy for seizure management identified as key factors associated with pediatric epilepsy self-management. Few studies have included mediator and moderator analyses. Measures of adherence were the most commonly used outcome. There has been a predominant focus on pediatric epilepsy influences and processes that are modifiable in nature, potentially at the expense of evidence for the role of community and health systems in pediatric epilepsy self-management. The 6 self-management instrument tools reported scientific rationale and good psychometric properties. Results highlight several key modifiable cognitive and behavioral targets for skills development: adherence, self-efficacy for seizure management, attitudes toward epilepsy, and family variables. Moving forward, a comprehensive pediatric epilepsy self-management model, well-validated measures of self-management behaviors, mediator/moderator designs to examine the complex relationships between predictors and pediatric epilepsy self-management outcomes, and studies examining the community and health care domains of self-management are necessary.