Abstracts

Rationale: Developing self-management skills is an essential process for successful transition to adulthood for many youth with epilepsy (YWE).  During adolescence, responsibility for epilepsy treatment shifts from parents to adolescents. Allocation of treatment responsibility (ATR) is the degree to which the patient and caregiver(s) share accountability for management tasks. Cognitive difficulties, which are common in YWE, may impede self-management tasks and are modifiable targets for intervention. The aims of this study were to: 1) assess the balance of treatment responsibilities during adolescence; 2) determine whether cognitive skills predict ATR; and 3) examine the association between AED responsibility and electronically-monitored adherence. Methods: Fifty-four adolescents with epilepsy (M = 15.33 ± 1.46 years; 68.5% female; 77.8% Caucasian) participated in a one-year study (4 time points). The Allocation of Treatment Responsibility questionnaire was completed by parents and adolescents. Cognitive skills were assessed by the Behavioral Assessment Scale for Children – 2 (attention problems, hyperactivity), Quality of Life in Epilepsy Inventory (memory, language problems), and Social Problem-Solving Inventory-Revised (social problem-solving; adolescent report). An electronic monitor was used to measure daily AED adherence. Medical and demographic variables were also collected. ATR was calculated separately for parents and adolescents as the difference between parent and adolescent responsibility. Scores near 0 indicated shared responsibility, negative scores indicated more child responsibility, and positive scores indicated more parent responsibility. Hierarchical linear modeling was used to determine which cognitive factors predicted ATR after controlling for age, time since diagnosis, seizures in the past year, and SES. Hierarchical linear modeling examined if ATR predicted adherence at 12 months. Results: Greater attention (β=.48, t=2.91, p=.006) and memory (β=-.48, t=-2.29, p=.028) problems predicted higher levels of parent responsibility for total health management (e.g., AED medication taking, labs, appointments) by parent report. Younger age (β=-.36, t=-2.30, p=.027) and greater difficulties in memory (β=-.68, t=-3.31, p=.004) were linked to greater parent involvement in adolescent-reported total ATR. Regarding parent-reported responsibility for daily AED administration, greater difficulties in attention predicted higher levels of parent involvement. From the adolescent’s perspective, younger age (β=-.39, t=-2.50, p=.017) and greater memory problems were related to higher levels of parent responsibility. Greater parent involvement with AEDs was associated with better adherence. Conclusions: Younger adolescents and those with attention and memory difficulties were more likely to have greater parent involvement in overall epilepsy management. Parent involvement in AED administration was linked to better adherence. Cultivation of self-management skills should start early in adolescence. YWE at-risk for attention and memory difficulties may benefit from targeted interventions to develop self-management skills to improve transition to adult care. Funding: Schmidlapp Women’s Scholars Fund