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

基于网络的干预措施可改善癫痫青少年的执行功能

• 批准号: 9223718
• 负责人: AVANI C MODI
• 金额: $ 19.5万
• 依托单位: CINCINNATI CHILDRENS HOSP MED CTR
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-02-12 至 2019-01-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9223718
• 关键词: 17 year old; Address; Adherence; Adolescent; Affect; Aftercare; Antiepileptic Agents; Attention deficit hyperactivity disorder; Behavior; Behavior Therapy; Caring; Child; Childhood; Clinical; Comorbidity; Complex; Data; Epilepsy; Equipment and supply inventories; Evidence based intervention; Executive Dysfunction; Exhibits; Family; Feedback; Focus Groups; Foundations; Future; Goals; Group Interviews; Impairment; Individual; Informal Social Control; Intervention; Intervention Trial; Link; Measures; Medical; Memory; Memory impairment; Methodology; Modeling; Monitor; Multi-Institutional Clinical Trial; Neurobehavioral Manifestations; Neurologic; Online Systems; Outcome; Participant; Performance; Pharmaceutical Preparations; Phase; Play; Population; Prevalence; Problem Solving; Process; Protocols documentation; Quality of life; Questionnaires; Recruitment Activity; Risk; Role; Seizures; Short-Term Memory; Sleep; Social Functioning; Statistical Data Interpretation; Subgroup; Symptoms; Technology; Teenagers; Testing; Time; Treatment Protocols; United States; Videoconferences; Vulnerable Populations; Youth; adverse outcome; base; clinical risk; depressive symptoms; executive function; health related quality of life; high risk; improved; inattention; innovation; medication compliance; neglect; nervous system disorder; neurobehavioral; non-drug; open label; patient oriented; personalized approach; preference; prevent; primary caregiver; problem solving therapy; psychologic; public health relevance; skills; social; social stigma; therapy design; therapy development; treatment adherence; usability

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.

描述（由申请人提供）：癫痫是一种常见的儿童疾病，影响着美国约 326,000 名青少年。患有癫痫的青少年面临着社会和学业成绩不佳、神经行为合并症（即内化和外化症状）以及治疗依从性差的重大风险。研究表明，这些不良结果的一个潜在原因是执行功能（EF）缺陷，执行功能被定义为目标导向的复杂活动所需的技能，包括解决问题、启动、监控、组织、计划、自我调节和工作记忆。 1/3 的癫痫青少年患有 EF 缺陷，是健康青少年患病率的 3 倍。改善EF的循证干预措施可以在预防不良后果（例如心理合并症、不遵守治疗方案）和促进癫痫青少年的最佳功能方面发挥关键作用；然而，针对这一弱势群体却没有任何此类措施。当前研究的目的是开发一种个性化的干预措施，通过以患者为中心的迭代过程来改善癫痫青少年的 EF（执行功能干预-癫痫；EFI-E），该过程包括：1） 根据焦点小组反馈确定癫痫青少年及其家人的独特需求（第 1 阶段），2) 对修订后的干预方案进行可用性测试，以征求有关适用性、内容和个性化方法的反馈（第 2 阶段），最后 3) 进行开放标签试验，以确定 EFI-E 对癫痫青少年的可行性、可及性、可接受性和初步效果（第 3 阶段）。我们计划在所有 3 个阶段招募 50 名参与者（第 1 阶段；n=6-10；第 2 阶段；n=6-10；第 3 阶段；n=30）。参与者将在执行功能行为评定量表 (BRIEF®) 上至少有一个临床升高的 EF 子量表或至少两个有风险的子量表分数（高于平均值 > 1 个标准差），才有资格参加 EFI-E。 EFI-E 将由 8-10 个基于网络的模块组成，解决基本的 EF 技能，包括：解决问题的技能、自我调节、工作记忆、监控和规划/组织。干预的前三个模块将被固定；然而，其余模块将根据青少年最突出的 EF 缺陷和偏好进行定制。每个在线模块都将伴随与治疗师的视频会议，以审查围绕青少年确定的目标的技能和解决问题的方法。基线和治疗后调查问卷将由青少年和主要护理人员填写，并在整个开放试验过程中获得电子监测的依从性。该项目满足了对基于证据的干预措施的迫切需求，以改善癫痫高危人群的 EF、减少神经行为合并症并改善 AED 不依从性。这种干预措施有可能最终改善一大群癫痫青少年的学习成绩、社会功能、睡眠、耻辱感和健康相关的生活质量。这项研究还为更大规模的多中心临床试验奠定了基础，该临床试验检验 EFI-E 在改善青少年结局方面的功效。

项目成果

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

• DOI: 10.1016/j.yebeh.2017.04.009
• 发表时间: 2017-07
• 期刊: Epilepsy & behavior : E&B
• 作者: Modi AC;Schmidt M;Smith AW;Turnier L;Glaser N;Wade SL
• 通讯作者: Wade SL

The formative design of Epilepsy Journey: A web-based executive functioning intervention for adolescents with epilepsy.

• DOI: 10.1007/s41686-017-0011-3
• 发表时间: 2017-12
• 期刊: Journal of formative design in learning
• 影响因子: 1.5
• 作者: Glaser NJ;Schmidt M;Wade SL;Smith A;Turnier L;Modi AC
• 通讯作者: Modi AC

Telepsychotherapy With Children and Families: Lessons Gleaned From Two Decades of Translational Research.

• DOI: 10.1037/int0000215
• 发表时间: 2020-06
• 期刊: Journal of psychotherapy integration
• 影响因子: 3.5
• 作者: Wade SL;Gies LM;Fisher AP;Moscato EL;Adlam AR;Bardoni A;Corti C;Limond J;Modi AC;Williams T
• 通讯作者: Williams T

Uncovering Key Elements of an Executive Functioning Intervention in Adolescents: Epilepsy Journey.

• DOI: 10.1037/cpp0000410
• 发表时间: 2022-06
• 期刊: CLINICAL PRACTICE IN PEDIATRIC PSYCHOLOGY
• 影响因子: 1.1
• 作者: Gutierrez-Colina, Ana M;Clifford, Lisa;Wade, Shari L;Modi, Avani C
• 通讯作者: Modi, Avani C

Pilot Executive Functioning Intervention in Epilepsy: Behavioral and Quality of Life Outcomes.

癫痫的试点执行功能干预：行为和生活质量结果。

• DOI: 10.1093/jpepsy/jsaa119
• 发表时间: 2021
• 期刊: Journal of pediatric psychology
• 影响因子: 3.6
• 作者: Modi,AvaniC;Mara,ConstanceA;Schmidt,Matthew;Smith,AimeeW;Turnier,Luke;Wade,ShariL
• 通讯作者: Wade,ShariL