Development of a web-based executive functioning intervention for adolescents with epilepsy: The Epilepsy Journey

Abstract

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.

Epilepsy Journey: A proof of concept trial of a Web‐based executive functioning intervention for adolescents with epilepsy

“…More specifically, a comprehensive EF intervention must target the hot EF domains of behavior and emotion regulation to support successful application of the cold EF metacognitive skills in complex, everyday settings. Using the ORBIT model of behavioral intervention development, we conducted phase 1a (define the problem: focus groups) and 1b (refine: formative user‐centered evaluation including usability testing and heuristic evaluation) design elements. These two steps yielded an engaging Web‐based intervention called Epilepsy Journey, in which participants took a journey to 10 different EF‐themed lands (learning modules), providing training in both metacognitive (cool EF) and behavior regulation (hot EF) skills, over a 12‐week timeframe.…”

Psychological treatments for adults and children with epilepsy: Evidence‐based recommendations by the International League Against Epilepsy Psychology Task Force

“…Commercially available products have also recently been tested in epilepsy and may prove to be beneficial . A new Web‐based executive functioning intervention for adolescents is currently being tested and may be one way to help youth with epilepsy overcome cognitive skill deficits …”

Examining sleep as a protective mechanism for executive functioning in children from low-income homes

“…EF is particularly important for healthy functioning because it can be linked to many long-term positive outcomes in varying areas. Given that young children undergo significant development in the pre-frontal cortex and subsequent executive functioning during this time and are more susceptible to damaging influences as a result, it is perhaps especially valuable to study the mechanisms underlying healthy development of executive functioning in this age group as opposed to others (Kalpakci, Ha, & Sharpit 2018;Modi et al, 2017;Steward et al, 2017;Helder, Zuverza-Chavarria, & Whitman, 2016). In early childhood, neural growth is particularly rapid, with the brain reaching 95% of its adult volume by age 6. fMRI data indicate that there is significant movement from local functional connectivity to longer-range connectivity over childhood, while EEG studies reveal that EEG power and coherence during working memory tasks becomes centralized at the frontal cortex by age 4 (Bell & Wolfe, 2007).…”