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基于网络的阿尔茨海默病临床前登记系统的可用性:来自横断面在线调查的启示。

Usability of a Web-Based Registry for Preclinical Alzheimer's Disease: Implications from a Cross-Sectional Online Survey.

机构信息

Kenichiro Sato and Takeshi Iwatsubo, Department of Neuropathology, Graduate School of Medicine, The University of Tokyo, Hongo 7-3-1, Bunkyo-ku, Tokyo, Japan, 113-8655, E-mail:

出版信息

J Prev Alzheimers Dis. 2024;11(3):661-671. doi: 10.14283/jpad.2024.48.

DOI:10.14283/jpad.2024.48
PMID:38706282
Abstract

BACKGROUND

We have been conducting a Japanese trial-ready cohort web study since 2019 as a web-based online registry to enroll individuals with preclinical Alzheimer's disease to facilitate trials on Alzheimer's disease prevention. The usability of a website might be an important factor in determining user participation and retention.

OBJECTIVES

We conducted a user questionnaire survey to analyze the usability of the Japanese trial-ready cohort website and user characteristics for future website improvement.

DESIGN

This was a cross-sectional prospective observational study.

SETTING

Online survey using Google Forms.

PARTICIPANTS

Among the Japanese trial-ready cohort web study participants, we enrolled those who provided consent to participate in the study and had completed one or more Cognitive Function Instrument tests before May 2, 2023. We sent an invitation e-mail, including the questionnaire web address, to eligible participants on July 21 and 22, 2023.

MEASUREMENTS

We analyzed the questionnaire answers, including the system usability scale score and time of response (in 24 h). We also compared the respondents' characteristics with that of all the Japanese trial-ready cohort web study participants to identify features associated with an increased/decreased response rate to the questionnaire.

RESULTS

Among the 10,112 Japanese trial-ready cohort web study participants that we sent invitation e-mails, we received 1,574 eligible responses (15.6%) within three weeks of the response acceptance period. The mean system usability scale score was 67.6, and no difference in system usability scale scores was observed in terms of age or sex. Approximately half of the respondents of the Japanese trial-ready cohort web study heard about it online, whereas one-fourth heard about it via newspapers. Contribution to drug development for dementia treatment was the most frequent motivation for participating in the Japanese trial-ready cohort web study (51.5%), followed by participation in the latest research (48.1%), concerns about self-memory (43.4%), and a family history of dementia (34.6%). Female respondents responded approximately 1.5 h later than male respondents. Lastly, those who had participated in the Japanese trial-ready cohort onsite study, were in their 70's, or had a larger number of Cognitive Function Instrument or Cogstate tests completion history were more likely to respond to the current online survey (relative risk of response > 1).

CONCLUSIONS

We conducted an online survey using Google Forms for participants in the Japanese trial-ready cohort web study to determine the usability. The results of this study might help to improve the user experience of the Japanese trial-ready cohort website itself, increase the web study registrants, maintain user retention, facilitate future online surveys, and serve as a reference for other web-based registries of presymptomatic disease status.

摘要

背景

自 2019 年以来,我们一直在进行一项日本试验准备队列网络研究,作为一个基于网络的在线注册系统,招募有临床前阿尔茨海默病的个体,以促进阿尔茨海默病预防的试验。网站的可用性可能是决定用户参与度和保留率的一个重要因素。

目的

我们进行了用户问卷调查,以分析日本试验准备队列网站的可用性和用户特征,以便未来进行网站改进。

设计

这是一项横断面前瞻性观察研究。

地点

使用 Google 表单的在线调查。

参与者

在日本试验准备队列网络研究参与者中,我们招募了那些同意参与研究并在 2023 年 5 月 2 日之前完成了一项或多项认知功能仪器测试的人。我们于 2023 年 7 月 21 日和 22 日向符合条件的参与者发送了一封包含问卷网址的邀请电子邮件。

测量

我们分析了问卷答案,包括系统可用性量表评分和响应时间(24 小时内)。我们还将受访者的特征与所有日本试验准备队列网络研究参与者的特征进行了比较,以确定与问卷响应率增加/减少相关的特征。

结果

在我们发送邀请电子邮件的 10112 名日本试验准备队列网络研究参与者中,我们在 3 周的响应接受期内收到了 1574 名合格的回复(15.6%)。系统可用性量表评分的平均值为 67.6,年龄和性别之间的系统可用性量表评分无差异。大约一半的日本试验准备队列网络研究参与者是在网上听说的,而四分之一的人是通过报纸听说的。为痴呆症治疗开发药物是参与日本试验准备队列网络研究的最常见动机(51.5%),其次是参与最新研究(48.1%)、对自我记忆的关注(43.4%)和痴呆症家族史(34.6%)。女性受访者的回复时间比男性受访者晚约 1.5 小时。最后,那些参加过日本试验准备队列现场研究、70 多岁或完成了更多认知功能仪器或 Cogstate 测试的人更有可能回复当前的在线调查(响应的相对风险 > 1)。

结论

我们使用 Google 表单为日本试验准备队列网络研究的参与者进行了在线调查,以确定其可用性。本研究的结果可能有助于改善日本试验准备队列网站本身的用户体验,增加网络研究注册人数,保持用户保留率,促进未来的在线调查,并为其他基于网络的疾病前期状态登记提供参考。

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