Self-management interventions in pediatric epilepsy: What is the level of evidence?

OBJECTIVE: To respond to recommendations put forth by the Institute of Medicine to improve self-management resources for youth with epilepsy by conducting a systematic review of the self-management literature in pediatric epilepsy. METHODS: 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. Abstract and keywords had to explicitly refer to "self-care" (pre-1996) and/or self-management (post-1996). The review was conducted in seven phases: (1) identification of bibliographical search criteria and databases; (2) abstract assessment; (3) full article review; (4) organization of final citations into instrument development, intervention, factors associated with self-management categories; (5) American Academy of Neurology level of evidence (LOE) assessment for intervention studies; (6) CONsolidated Standards of Reporting Trials (CONSORT) evaluation of LOE level III articles utilizing a control group; and (7) categorization of intervention outcomes across four self-management domains. RESULTS: Of the 87 articles that met eligibility criteria, 24 were interventions and received LOE scores of level III or IV. Most studies (n = 20, 80%) were scored at level III; however, only eight had a control group and adhered to CONSORT guidelines. They largely neglected information on intervention components (e.g., implementation, treatment fidelity), randomization, participant flow, missing data, and effect size or confidence intervals. The 24 intervention studies reported significant impact in four domains: individual (n = 13), family (n = 6), health care system (n = 3), and community (n = 2). SIGNIFICANCE: There are no level I or II studies. No study met full CONSORT guidelines. Outcomes were well described; however, the nature of self-management interventions (e.g., multiple foci, skills targeted) and the observed heterogeneity in outcomes complicates comparisons across studies. Randomized controlled trials (RCTs) that include large sample sizes, impact of the intervention, treatment fidelity, and power analyses are necessary to further this evidence base.

A Systematic Review of U.S. Studies on the Prevalence of Intellectual or Developmental Disabilities Since 2000.

This systematic review examined 14 U.S. studies published since 2000 reporting prevalence estimates for intellectual disability (ID) or developmental disability (DD). Prevalence rates for children were between 11.0 and 13.4 per 1,000 for ID and between 45.8 and 69.9 per 1,000 for DD using data from 2010 or later. A 2015 Ohio study of adults yielded a prevalence estimate of 41.0 per 1,000 for DD. The only study of ID in adults and the only study incorporating DD Act definitions used the 1994/1995 NHIS-D yielding prevalence estimates for ID and/or DD of 38.2 per 1,000 for children birth to 5 years, 31.7 for children 6 to 18 years, and 7.9 per 1,000 for adults. Notable differences in prevalence estimates by age and operational definition have important implications for public policy and research. Serious surveillance gaps limit our understanding of service utilization rates, unmet needs, and health and other outcomes for adults with ID or DD.

Improving Self-Management Skills Through Patient-Centered Communication.

PURPOSE: We tested relationships between patient-centered communication (PCC), relatedness to health care providers, and autonomy around health care management among youth with and without mobility limitations (MLs) and examined whether the relationship between PCC and autonomy was mediated by how connected youth feel to their health care providers. METHODS: Stratified multiple regression models were used to examine predicted associations for youth with and without MLs. RESULTS: PCC was significantly associated with relatedness to health care providers and autonomy for managing health care among youth with and without MLs. After controlling for covariates, evidence of mediation was observed among youth without MLs but not for youth with MLs. CONCLUSIONS: For youth without MLs, mediation suggests that youth's connection to their health care provider contributes to higher levels of health-related autonomy. For youth with MLs, independent of feeling connected to health care providers, more frequent PCC resulted in higher levels of health-related autonomy.