Modi Avani C, Schmidt Matthew, Smith Aimee W, Turnier Luke, Glaser Noah, Wade Shari L
Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, 3333 Burnet Ave., Cincinnati, OH 45229-3039, United States.
College of Education, Criminal Justice, and Human Services, University of Cincinnati, Cincinnati, OH, 45221, United States.
Epilepsy Behav. 2017 Jul;72:114-121. doi: 10.1016/j.yebeh.2017.04.009. Epub 2017 Jun 7.
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.
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.
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.
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.
患有癫痫的青少年在执行功能（EF）方面存在显著缺陷，但针对青少年改善执行功能的干预措施却很少。本研究的目的是开发一种名为“癫痫之旅”的个性化干预措施，通过包括焦点小组和可用性测试在内的迭代式、以患者为中心的过程来改善执行功能的各个方面。
五名青少年及其照顾者参与了焦点小组。这些意见被用于根据执行功能行为评定量表的子量表以及可能影响青少年执行功能的关键问题开发十个学习模块。六名青少年参与了可用性测试，一名可用性专家进行了启发式评估。还完成了人口统计学信息、病历审查和执行功能测量。
焦点小组参与者及其父母报告了在记忆、注意力、组织、监控、启动、冲动、情绪控制、睡眠、学校意识和压力管理方面存在困难。他们还确定了应对记忆和组织困难的成功策略。对最终的“癫痫之旅”模块进行的可用性测试揭示了导航方面的问题，并确定了促进可用性的功能，包括进度条和交互式模块。每次可用性试验后都进行了程序修改，从而形成了一个相对简短、交互式且易于导航的程序。除一名参与者外，其他人对该程序的感知效用都很高。参与者认为内容很有帮助，并表示会向他人推荐“癫痫之旅”。
焦点小组和可用性测试的反馈产生了一种针对癫痫青少年可行、可接受、相关且用户友好的基于网络的干预措施。“癫痫之旅”项目将在患有癫痫和相关执行功能缺陷的青少年中进行开放试点进一步测试。
