Abstracts

Rationale: Executive functioning (EF) includes skills necessary for goal-directed and complex activities such as problem-solving, initiating, monitoring, organizing, planning, self-regulating and using working memory. Youth with epilepsy exhibit significant deficits in EF, with at least 30% having deficits in the clinical range, yet there are few interventions to improve EF for adolescents. The aim of the current study was to develop an individually-tailored e-health intervention (Epilepsy Journey) to improve aspects of EF through an iterative, patient-centered process including focus groups and usability testing. We present here the results from an open pilot trial of Epilepsy Journey.  Methods: Thirty-one adolescents with epilepsy and their caregivers participated in focus groups, usability testing, or an open trial. Focus groups elicited necessary content/features for the development of Epilepsy Journey. Subsequent usability testing uncovered issues that could lead to lack of program adoption or use (e.g., ease-of-use, error rates, time to completion). A final version of Epilepsy Journey, a web-based platform consisting of 10 learning modules augmented with therapist assisted Skype sessions, was developed to equip adolescents with strategies for improving various EF skills. Demographic information, chart reviews, and measures of EF (parent and self-reported Behavior Rating Inventory of Executive Function; BRIEF) were collected. Results: Focus group participants (n=5; age=14.3±1.3 years old, 40% male; 40% idiopathic generalized) and their caregivers reported difficulties with memory, attention, organization, monitoring, initiation, impulsivity, emotional control, sleep, awareness in schools and managing stress. Usability testing (n=6; age=15.9±1.3 years old, 17% male; 33% idiopathic focal) of the resultant Epilepsy Journey modules (Figure 1) revealed problems with navigation and identified features that promoted usability, including progress bars and interactive modules. Program modifications were made resulting in a relatively brief, interactive and readily navigable learning environment, which had high perceived utility by a majority of participants. For the open trial (n=20; Age=15.7±1.3 years old, 40% male; 60% idiopathic generalized), pre-post analyses have been conducted on participants who have completed the trial to date (n=7). Significant improvements were found on the parent BRIEF subscales of emotional control (t(6)=2.5, pppppp Conclusions: Focus group and usability methodology allowed for the development of an accessible, brief, interactive 10-module EF intervention. Preliminary trial results suggest that this web-based intervention, augmented with Skype-assisted sessions with an interventionist yields positive changes in several EF domains. Important next steps are to complete recruitment and collect follow-up data for participants in the clinical trial to assess whether these findings maintain over time. Funding: This research was funded by the National Institutes of Health-Eunice Kennedy Shriver National Institute of Child Health and Human Development (R21HD083335-01).