Abstract

Objective

To examine changes in emotional and behavioral functioning and health-related quality of life (HRQOL) following a web-based executive functioning (EF) intervention open pilot trial (e.g., Epilepsy Journey) for adolescents with epilepsy.

Methods

Adolescents with an established diagnosis of epilepsy, EF deficits, and without developmental disorders participated in a single-arm trial of Epilepsy Journey. Epilepsy Journey is a gamified, online learning environment comprised of 10 learning modules targeting EF deficits (e.g., working memory, organization) and tailored to epilepsy with accompanying telehealth problem-solving sessions. Adolescents completed questionnaires assessing emotional and behavioral functioning and HRQOL at baseline, posttreatment, and 2 follow-ups . Longitudinal mixed models and logistic regression analyses were used for these secondary analyses.

Results

39 adolescents were recruited for Epilepsy Journey (M_age=15.3 years; 67% female; 87% White: Non-Hispanic; 39% experienced seizures in the past 3 months). Preliminary data indicate significant improvements in caregiver-reported Externalizing symptoms, Behavioral Symptom Index scores and Adaptive Skills from baseline to 5-month follow-up. Significant improvements were observed for caregiver-reported Mood/Behavior and self-reported Impact, Cognitive Functioning, Executive Functioning, and Sleep subscales of the PedsQL Epilepsy Module. Clinically significant improvements (e.g., clinical/at-risk to normative levels) in behavioral and quality of life domains were also noted.

Conclusion

Epilepsy Journey appears to contribute to changes in emotional and behavioral functioning and HRQOL in adolescents with epilepsy. Given the proof of concept trial format of this study, an important future direction is to conduct a randomized controlled trial with a larger, generalizable cohort of adolescents with epilepsy.

中文翻译：

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癫痫的试点执行功能干预：行为和生活质量结果

摘要

客观的

在基于网络的执行功能 (EF) 干预开放试点试验（例如，癫痫之旅）对患有癫痫的青少年进行后，检查情绪和行为功能以及与健康相关的生活质量 (HRQOL) 的变化。

方法

已确诊癫痫、EF 缺陷且没有发育障碍的青少年参加了癫痫之旅的单臂试验。Epilepsy Journey 是一个游戏化的在线学习环境，由 10 个针对 EF 缺陷（例如，工作记忆、组织）的学习模块组成，并针对癫痫症量身定制，并附带远程医疗问题解决课程。青少年完成了评估基线、治疗后和 2 次随访时的情绪和行为功能以及 HRQOL 的问卷调查。纵向混合模型和逻辑回归分析用于这些二次分析。

结果

癫痫之旅招募了 39 名青少年（M_年龄= 15.3 岁；67% 女性；87% 白人：非西班牙裔；39% 在过去 3 个月内经历过癫痫发作）。初步数据表明，从基线到 5 个月的随访，护理人员报告的外化症状、行为症状指数评分和适应技能有显着改善。在 PedsQL 癫痫模块的护理人员报告的情绪/行为和自我报告的影响、认知功能、执行功能和睡眠分量表方面观察到显着改善。还注意到行为和生活质量领域的临床显着改善（例如，临床/有风险达到规范水平）。

结论

癫痫之旅似乎有助于癫痫青少年的情绪和行为功能以及 HRQOL 的变化。鉴于本研究的概念验证试验形式，一个重要的未来方向是对更大的、可概括的癫痫青少年队列进行随机对照试验。