Summary
Objective
To examine the preliminary feasibility and acceptability of a Web‐based program, Epilepsy Journey, to improve executive function behaviors in adolescents with epilepsy.
Methods
We conducted a proof of concept single‐arm pilot trial of Epilepsy Journey with 31 adolescents (average age = 15.3 ± 1.3 years) who had an epilepsy diagnosis and executive function (EF) deficits on the caregiver‐report version of the Behavior Rating Inventory of Executive Function (BRIEF). Epilepsy Journey coupled a gamified problem‐solving website comprised of 10 learning modules targeting EF deficits (eg, working memory, organization, problem‐solving) with Skype sessions with a trained therapist. Outcomes included feasibility (attrition, sessions completed) and acceptability (satisfaction ratings). Exploratory analyses examined changes in caregiver‐, self‐, and teacher‐reported BRIEF scores from baseline to posttreatment and at 2‐ and 5‐month follow‐ups.
Results
Seventy‐nine percent of participants completed the program. Satisfaction was high, with 97% of caregivers and adolescents rating the program as helpful and indicating they would recommend it to others. Caregivers and adolescents reported global improvements on the BRIEF, with caregivers reporting significant improvements on all BRIEF subscales. EF symptoms rebounded slightly between the 2‐ and 5‐month follow‐ups for some of the self‐ and caregiver‐reported BRIEF scales. Notably, clinically meaningful improvements (eg, clinical/subclinical to normative levels) were reported for several caregiver‐reported BRIEF subscales, including the Global Executive Composite (62% to 33‐34%) and Metacognitive Index (74% to 41‐42%) from baseline to 2‐ and 5‐month follow‐up.
Significance
Findings suggest that a Web‐based problem‐solving intervention tailored to EF deficits for adolescents with epilepsy is both feasible and acceptable and may contribute to improvements in EF behaviors across domains.
Introduction
Youth with epilepsy exhibit significant deficits in executive functioning (EF), yet there are few interventions to improve EF for adolescents. The aims of the current study were to develop an individually-tailored intervention, called Epilepsy Journey, to improve aspects of EF through an iterative, patient-centered process including focus groups and usability testing.
Methods
Five adolescents and caregivers participated in focus groups. This input was used to develop ten learning modules based on subscales of the Behavioral Rating Inventory of Executive Functions and key issues that may impact EF in adolescents. Six adolescents participated in usability testing and a usability expert conducted a heuristic evaluation. Demographic information, chart reviews and measures of EF were also completed.
Results
Focus group participants and their parents reported difficulties with memory, attention, organization, monitoring, initiation, impulsivity, emotional control, sleep, awareness in schools and managing stress. They also identified successful strategies to address memory and organizational difficulties. Usability testing of the resultant Epilepsy Journey modules revealed problems with navigation and identified features that promoted usability, including progress bars and interactive modules. Program modifications were made after each usability trial resulting in a relatively brief, interactive and readily navigable program. Perceived utility was high with all but one participant. Participants rated the content as helpful and indicated they would recommend Epilepsy Journey to others.
Conclusions
Feedback from the focus group and usability testing yielded a feasible, acceptable, relevant and user-friendly web-based intervention for adolescents with epilepsy. The Epilepsy Journey program will be further tested in an open pilot with adolescents with epilepsy and associated EF deficits.
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