Clinical Psychology Unit, Department of Neuroscience and Neurorehabilitation, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy.
Clinical Psychology Unit, Department of Neuroscience and Neurorehabilitation, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy; Rare and Complex Epilepsies Unit, Department of Neuroscience and Neurorehabilitation, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy.
Epilepsy Behav. 2020 May;106:106957. doi: 10.1016/j.yebeh.2020.106957. Epub 2020 Mar 16.
Epilepsy in adolescents affects their psychological health, independence, and emotional adjustment. Psychological and self-management interventions might give benefits to adolescent with epilepsy in terms of quality of life, emotional well-being, and reduced fatigue. "Fondazione Tender To Nave Italia" promotes a project using sailing activities as an empowerment opportunity. The main aim of our study was to examine the empowerment effects on quality of life of adolescents with epilepsy attending sailing activities, and to compare the results perceived by adolescents and their parents.
Fifty-eight patients with a diagnosis of epilepsy were included in an empowerment project titled "Waves rather than spikes" from June 2013 to July 2018. Intellectual level was based on the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) criteria. Patients were administered Pediatric Quality of Life Inventory (PedsQL), adolescent and parent version. Behavioral data were collected by parent-report Child Behavior Checklist (CBCL).
Thirty female and 28 male patients with a mean age of 15 years, referred to "Bambino Gesù Children's Hospital" in Italy, were included. Thirty-three (56.9%) patients had a history of refractory epilepsy; 34 (56.2%) received polytherapy, 19 (32.7%) monotherapy, and 5 (8.6%) were not taking antiepileptic drugs. Intellectual functioning was normal in 43 (74.1%), borderline in 9 (15.5%), and mildly impaired in 6 (10.3%). Results from PedsQL adolescent report revealed significant postintervention improvement for total score (p = 0.023) and in two domains: physical health (p = 0.0066) and emotional functioning (p = 0.015). Results from PedsQL parent report showed significant postintervention improvement for the domain of school functioning (p = 0.023). In the multivariate model, a low CBCL value was predicting a higher score in the health subscore difference between pre- and postempowerment activity (p = 000.8).
Empowerments activities are crucial in order to reduce the burden of epilepsy in adolescents, and to improve quality of life. These are critical factors for a well-managed transition phase to adulthood.
青少年癫痫会影响其心理健康、独立性和情绪调整。心理和自我管理干预措施可能会提高青少年癫痫患者的生活质量、情绪幸福感和减少疲劳。“意大利纳维慈善基金会”（Fondazione Tender To Nave Italia）开展了一个项目，利用帆船运动作为赋权机会。我们的主要研究目的是检验参加帆船活动对青少年癫痫患者生活质量的赋权效果，并比较青少年及其父母的感知结果。
从 2013 年 6 月至 2018 年 7 月，共有 58 名被诊断为癫痫的患者参加了一个名为“波浪而非尖峰”的赋权项目。智力水平基于《精神障碍诊断与统计手册》第 5 版（DSM-5）标准。患者接受了儿童生活质量问卷（PedsQL）、青少年和家长版评估。行为数据由家长报告的儿童行为检查表（CBCL）收集。
意大利“Bambino Gesù 儿童医院”共纳入 30 名女性和 28 名男性患者，平均年龄为 15 岁。其中 33 名（56.9%）患者有难治性癫痫病史；34 名（56.2%）接受了多种药物治疗，19 名（32.7%）接受单一药物治疗，5 名（8.6%）未服用抗癫痫药物。43 名（74.1%）患者的智力功能正常，9 名（15.5%）为边缘智力，6 名（10.3%）为轻度智力障碍。青少年 PedsQL 报告的结果显示，总评分（p=0.023）和两个领域（身体功能，p=0.0066；情绪功能，p=0.015）在干预后有显著改善。青少年 PedsQL 家长报告的结果显示，学校功能领域在干预后有显著改善（p=0.023）。在多变量模型中，CBCL 值较低预示着赋权活动前后健康子评分差异的得分较高（p=0.000.8）。
赋权活动对于减轻青少年癫痫的负担，提高生活质量至关重要。这些是管理青春期向成年期过渡的关键因素。
