Enhancing epilepsy self-management and quality of life for adults with epilepsy with varying social and educational backgrounds using PAUSE to Learn Your Epilepsy
Enhancing epilepsy self-management and quality of life for adults with epilepsy with varying social and educational backgrounds using PAUSE to Learn Your Epilepsy
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DOI：
10.1016/j.yebeh.2020.107228
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发表时间：
2020-10-01
影响因子：
2.6
通讯作者：
Loeb, Jeffrey A.
中科院分区：
文献类型：
--
作者：
Pandey, Dilip K.;Dasgupta, Raktima;Loeb, Jeffrey A.
目的：癫痫患者（PWE）来自各种各样的社会背景和教育技能，使自我管理（SM）教育具有挑战性。在这里，我们评估了基于移动的技术的个性化癫痫SM教育干预，暂停学习癫痫（PAUSE），是否改善SM措施，如自我效能，癫痫SM行为，癫痫结局预期，生活质量（QOL），以及癫痫对成人癫痫患者的个人影响。方法：PAUSE研究的招募时间为2015年10月至2019年3月。91名PWE使用支持互联网的平板电脑应用程序接受教育，该应用程序从Epilepsy.com下载定制的患者特定教育程序。使用经过验证的自我报告问卷进行结果测量。参与者在基线（T0）、完成PWE起搏的8-12周SM教育干预后的首次随访（T1）和首次随访后至少3个月的第二次随访（T2）进行评估。多元线性回归被用来评估这些时间点之间的结果measurements的受试者内的显着变化。结果：研究人群是多样化的，包括个人各种各样的SM教育需求和能力。首次随访评估（T1）的中位时间约为基线后4个月（T0），第二次随访评估（T2）约为基线后8个月。参与者在所有SM行为、自我效能、结果期望方面都有显著改善。从T0到T1，癫痫测量的QOL和个人影响。在基线时得分较低的参与者往往在T1时表现出更大的改善。结论：基于移动的技术的个性化SM干预是可行的。结果提供证据表明，癫痫SM行为和做法，生活质量，癫痫治疗和管理的结果预期，自我效能，结果预期和癫痫的影响显着改善后，个性化的SM教育干预。这强调了更需要一个务实的试验来测试个性化SM教育的有效性，例如暂停学习癫痫，在更广泛的环境中，专门针对难以接触和难以治疗的PWE人群的独特需求。(C)2020爱思唯尔公司All rights reserved.
Purpose: People with epilepsy (PWE) come from a wide variety of social backgrounds and educational skillsets, making self-management (SM) education for improving their condition challenging. Here, we evaluated whether a mobile technology-based personalized epilepsy SM education intervention, PAUSE to Learn Your Epilepsy (PAUSE), improves SM measures such as self-efficacy, epilepsy SM behaviors, epilepsy outcome expectations, quality of life (QOL), and personal impact of epilepsy in adults with epilepsy.Methods: Recruitment for the PAUSE study occurred from October 2015 to March 2019. Ninety-one PWE were educated using an Internet-enabled computer tablet application that downloads custom, patient-specific educational programs from Epilepsy.com . Validated self-reported questionnaires were used for outcome measures. Participants were assessed at baseline (T0), the first follow-up at completion of the PWE-paced 8-12-week SM education intervention (T1), and the second follow-up at least 3 months after the first follow-up (T2). Multiple linear regression was used to assess within-subject significant changes in outcome measures between these time points.Results: The study population was diverse and included individuals with a wide variety of SM educational needs and abilities. The median time for the first follow-up assessment (T1) was approximately 4 months following the baseline (T0) and 8 months following baseline for the second follow-up assessment (T2). Participants showed significant improvement in all SM behaviors, self-efficacy, outcome expectancy. QOL, and personal impact of epilepsy measures from T0 to T1. Participants who scored lower at baseline tended to show greater improvement at T1. Similarly, results showed that participant improvement was sustained in the majority of SM measures from T1 to T2.Conclusion: This study demonstrated that a mobile technology-based personalized SM intervention is feasible to implement. The results provide evidence that epilepsy SM behavior and practices, QOL, outcome expectation for epilepsy treatment and management, self-efficacy, and outcome expectation and impact of epilepsy significantly improve following a personalized SM education intervention. This underscores a greater need for a pragmatic trial to test the effectiveness of personalized SM education, such as PAUSE to Learn Your Epilepsy, in broader settings specifically for the unique needs of the hard-to-reach and hard-to-treat population of PWE. (C) 2020 Elsevier Inc. All rights reserved.