Web-based Intervention to Improve Executive Functioning in Teens with Epilepsy

描述（由申请人提供）：癫痫是一种常见的儿童疾病，影响美国约326,000名青少年。患有癫痫的青少年在社交和学业成绩差、神经行为合并症（即内化和外化症状）和治疗依从性差方面存在显著风险。研究表明，造成这些不良结果的一个潜在原因是执行功能（EF）的缺陷，执行功能被定义为目标导向和复杂活动所需的技能，包括解决问题、发起、监督、组织、计划、自我调节和工作记忆。1/3的青少年癫痫患者存在EF缺陷，是健康青少年的3倍。改善EF的循证干预措施可以在预防不良后果（如心理合并症、不遵守治疗方案）和促进青少年癫痫患者的最佳功能方面发挥关键作用；然而，针对这一弱势群体的医疗服务却不存在。当前研究的目的是通过一个反复的、以患者为中心的过程，开发一种个性化的干预措施来改善青少年癫痫患者的EF（执行功能干预-癫痫；EFI-E），包括：1)识别

DESCRIPTION (provided by applicant): Epilepsy is a common childhood condition affecting approximately 326,000 youth in the United States. Adolescents with epilepsy are at significant risk for poor social and academic outcomes, neurobehavioral comorbidities (i.e., internalizing and externalizing symptoms), and poor treatment adherence. Studies have shown that one potential reason for these poor outcomes are deficits in executive functioning (EF), defined as the skills necessary for goal-directed and complex activities, including problem-solving, initiation, monitoring, organization, planning, self-regulation and working memory. EF deficits have been documented in 1/3 of youth with epilepsy, which is 3 times the prevalence in healthy youth. Evidence-based interventions to improve EF could play a critical role in preventing adverse outcomes (e.g., psychological comorbidities, non-adherence to the treatment regimen) and promoting optimal functioning in adolescents with epilepsy; however none exists for this vulnerable population. The aim of the current study is to develop an individually-tailored intervention to improve EF in adolescents with epilepsy (Executive Functioning Intervention-Epilepsy; EFI-E) through an iterative, patient-centered process that includes: 1) identification of the unique needs of adolescents with epilepsy and their families based on focus group feedback (Phase 1), 2) usability testing of a revised intervention protocol to elicit feedback on the applicability, content, and individualized approach (Phase 2), and finally 3) an open-label trial t establish the feasibility, accessibility, acceptability, and preliminary effect of the EFI-E for adolescents with epilepsy (Phase 3). We plan to recruit 50 participants for all 3 phases (Phase 1; n=6-10; Phase 2; n=6-10; Phase 3; n=30). Participants will have at least one clinically-elevated EF subscale or at least two at-risk subscale scores on (> 1 standard deviation above the mean) on the Behavior Rating Inventory of Executive Function (BRIEF®)) to qualify for the EFI-E. EFI-E will consist of 8-10 web-based modules addressing foundational EF skills including: problem-solving skills, self-regulation, working memory, monitoring, and planning/organizing. The first three modules of the intervention will be fixed; however, the remaining modules will be tailored based on the adolescent's most prominent EF deficit and preference. Each online module will be accompanied by a videoconference with a therapist to review the skills and problem solve around an adolescent-identified goal. Baseline and post-treatment questionnaires will be completed by adolescents and primary caregivers and electronically-monitored adherence will be obtained throughout the open trial. This project addresses the critical need for evidence-based interventions to improve EF, reduce neurobehavioral comorbidities, and improve AED non-adherence in a high risk epilepsy population. This intervention has the potential to ultimately improve academic performance, social functioning, sleep, stigma, and health-related quality of life in a large subgroup of adolescents with epilepsy. This study also lays the foundation for larger multi-site clinical trial examining the efficacy of EFI-E in improving adolescent outcomes.