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本文引用的文献

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Usability and feasibility of E-nergEYEze: a blended vision-specific E-health based cognitive behavioral therapy and self-management intervention to reduce fatigue in adults with visual impairment.E-nergEYEze 的可用性和可行性:一种混合的基于视力的特定电子健康的认知行为疗法和自我管理干预,以减少视力障碍成年人的疲劳。
BMC Health Serv Res. 2023 Nov 16;23(1):1271. doi: 10.1186/s12913-023-10193-4.
2
The relation between cognitive-behavioural responses to symptoms in patients with long term medical conditions and the outcome of cognitive behavioural therapy for fatigue - A secondary analysis of four RCTs.患有长期疾病的患者对症状的认知行为反应与疲劳认知行为疗法的结果之间的关系——四项随机对照试验的二次分析
Behav Res Ther. 2023 Feb;161:104243. doi: 10.1016/j.brat.2022.104243. Epub 2022 Dec 15.
3
Implementation of Cognitive Behavioral Therapy in e-Mental Health Apps: Literature Review.电子心理健康应用中认知行为疗法的实施:文献综述。
J Med Internet Res. 2022 Mar 10;24(3):e27791. doi: 10.2196/27791.
4
E-nergEYEze, a vision-specific eHealth intervention based on cognitive behavioral therapy and self-management to reduce fatigue in adults with visual impairment: study protocol for a randomized controlled trial.E-nergEYEze,一种基于认知行为疗法和自我管理的视觉特异性电子健康干预措施,用于减少视力障碍成年人的疲劳:一项随机对照试验的研究方案。
Trials. 2021 Dec 28;22(1):966. doi: 10.1186/s13063-021-05935-w.
5
Smartphones-Based Assistive Technology: Accessibility Features and Apps for People with Visual Impairment, and its Usage, Challenges, and Usability Testing.基于智能手机的辅助技术:视障人士的无障碍功能与应用及其使用、挑战和可用性测试。
Clin Optom (Auckl). 2021 Nov 27;13:311-322. doi: 10.2147/OPTO.S336361. eCollection 2021.
6
Feasibility and user experience of the unguided web-based self-help app 'MyDiaMate' aimed to prevent and reduce psychological distress and fatigue in adults with diabetes.旨在预防和减轻糖尿病成人心理困扰与疲劳的非指导性网络自助应用程序“MyDiaMate”的可行性及用户体验。
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7
Anxiety and depression in patients who receive anti-VEGF treatment and the usability and feasibility of e-mental health support: the E-PsEYE pilot study.接受抗血管内皮生长因子(VEGF)治疗的患者的焦虑和抑郁,以及电子心理健康支持的可用性和可行性:E-PsEYE 试点研究。
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JAMA Psychiatry. 2021 Apr 1;78(4):361-371. doi: 10.1001/jamapsychiatry.2020.4364.
9
MS Energize: Field trial of an app for self-management of fatigue for people with multiple sclerosis.MS活力:一款用于多发性硬化症患者疲劳自我管理的应用程序的现场试验。
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10
Internet-Based Cognitive Behavioral Therapy in Stepped Care for Chronic Fatigue Syndrome: Randomized Noninferiority Trial.基于互联网的认知行为疗法用于慢性疲劳综合征的分级护理:随机非劣效性试验
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参与E-nergEYEze随机对照试验的患者和医疗保健专业人员的体验:一项混合方法研究,E-nergEYEze是一种针对视力障碍成年人的特定视力电子健康干预措施,用于减轻疲劳。

User Experiences Among Patients and Health Care Professionals Who Participated in a Randomized Controlled Trial of E-nergEYEze, a Vision-Specific eHealth Intervention to Reduce Fatigue in Adults With Visual Impairment: Mixed Methods Study.

作者信息

Veldman Manon Hj, van der Aa Hilde Pa, Knoop Hans, Bode Christina, van Rens Ger Hmb, van Nispen Ruth Ma

机构信息

Amsterdam UMC, location Vrije Universiteit Amsterdam, Ophthalmology, Amsterdam, The Netherlands.

Quality of Care, Mental Health, Amsterdam Public Health, Amsterdam, The Netherlands.

出版信息

JMIR Form Res. 2025 Aug 7;9:e53080. doi: 10.2196/53080.

DOI:10.2196/53080
PMID:40773749
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12371291/
Abstract

BACKGROUND

Fatigue is a common symptom occurring in individuals with visual impairment (VI). Feeling fatigued has a strong impact on an individual's well-being, with profound consequences. Cognitive and emotional functioning, social roles, and participation are negatively affected in severely fatigued individuals with VI. Therefore, we developed E-nergEYEze, a blended vision-specific eHealth intervention based on cognitive behavioral therapy and self-management to reduce fatigue severity in adults with VI.

OBJECTIVE

We aimed to report the experience of patients and professionals with E-nergEYEze. To complement cost-effectiveness outcomes, the user experiences from both perspectives were considered relevant for a better understanding of the intervention uptake.

METHODS

E-nergEYEze was studied in a randomized controlled trial. User experiences of participants with VI and severe fatigue (51/98, 52%; median age 58.0, IQR 53.0-65.0 years; female participants: 32/51, 63%), who were randomized to the intervention group, and professionals (n=11), who provided blended support, were evaluated. The Dutch Mental Health Care Thermometer questionnaire and a therapist evaluation were used and analyzed using mixed methods. A focus group meeting with social workers (4/7, 57%), a computer trainer (1/7, 14%), and psychologists (2/7, 29%) was held for more in-depth information. The eHealth platform provided data on user engagement from both perspectives.

RESULTS

E-nergEYEze was completed by 63% (32/51) of patients for more than 80% of the module steps. Overall, results on user engagement showed that a median 89% (IQR 45%-100%) of all assigned module steps were completed, with all modules being completed by at least 50% (37/51) of the patients. Completion of the intervention was related to the presence of digital proficiency; having the appropriate expectations; content that matches personal preferences and life context; and the absence of impeding personal circumstances, mental health issues, or other concurrent rehabilitation programs. The intervention was given a median grade of 7.0 out of 10.0 (IQR 6.0-8.0), and 87% (39/45) of the patients reported that they would recommend E-nergEYEze to others. However, improvements in the frequency and quality of guidance were considered highly relevant. Professionals reported that E-nergEYEze required patients' self-efficacy, motivation, and digital skills; therefore, preselection was seen as essential. Professionals' affinity with eHealth was considered important to provide appropriate remote support.

CONCLUSIONS

eHealth provides treatment opportunities for individuals with VI for which guidance is considered highly relevant. During participation in E-nergEYEze, patients were engaged, internalized personally relevant topics, and made use of the benefits of eHealth. More attention to the suitability of patients and training of professionals for providing remote support is considered essential. These user experiences underlined the potential of E-nergEYEze to reduce fatigue severity in adults with VI and provided valuable insights to learn from and optimize E-nergEYEze.

TRIAL REGISTRATION

International Clinical Trials Registry Platform (ICTRP) NL7764; https://tinyurl.com/32b3xt74.

摘要

背景

疲劳是视力障碍(VI)患者常见的症状。感到疲劳对个人幸福有很大影响,会产生深远后果。在患有视力障碍且严重疲劳的个体中,认知和情感功能、社会角色及参与度都会受到负面影响。因此,我们开发了E-nergEYEze,这是一种基于认知行为疗法和自我管理的针对视力障碍的混合式电子健康干预措施,旨在减轻成年视力障碍患者的疲劳严重程度。

目的

我们旨在报告患者和专业人员对E-nergEYEze的体验。为补充成本效益结果,从这两个角度的用户体验被认为对于更好地理解干预措施的采用情况具有相关性。

方法

在一项随机对照试验中对E-nergEYEze进行了研究。对随机分配到干预组的视力障碍且严重疲劳的参与者(51/98,52%;中位年龄58.0岁,四分位距53.0 - 65.0岁;女性参与者:32/51,63%)以及提供混合支持的专业人员(n = 11)的用户体验进行了评估。使用了荷兰心理健康护理温度计问卷和治疗师评估,并采用混合方法进行分析。与社会工作者(4/7,57%)、计算机培训师(1/7,14%)和心理学家(2/7,29%)举行了焦点小组会议以获取更深入的信息。电子健康平台从两个角度提供了用户参与度数据。

结果

63%(32/51)的患者完成了E-nergEYEze超过80%的模块步骤。总体而言,用户参与度结果显示,所有分配的模块步骤的完成率中位数为89%(四分位距45% - 100%),所有模块至少有50%(37/51)的患者完成。干预措施的完成与数字技能水平、有适当的期望、内容符合个人偏好和生活背景以及不存在阻碍个人情况、心理健康问题或其他并发康复计划有关。该干预措施的中位数评分为7.0(满分10.0,四分位距6.0 - 8.0),87%(39/45)的患者表示他们会向他人推荐E-nergEYEze。然而,指导的频率和质量的改进被认为非常重要。专业人员报告称,E-nergEYEze需要患者的自我效能感、动力和数字技能;因此,预先筛选被视为至关重要。专业人员对电子健康的亲和力被认为对于提供适当的远程支持很重要。

结论

电子健康为视力障碍个体提供了治疗机会,其中指导被认为非常重要。在参与E-nergEYEze期间,患者积极参与,将个人相关主题内化,并利用了电子健康的优势。更多关注患者的适用性以及对专业人员进行提供远程支持的培训被认为至关重要。这些用户体验强调了E-nergEYEze在减轻成年视力障碍患者疲劳严重程度方面的潜力,并为学习和优化E-nergEYEze提供了有价值的见解。

试验注册

国际临床试验注册平台(ICTRP)NL7764;https://tinyurl.com/32b3xt74 。