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影响参与基于网络的阿尔茨海默病问卷调查的因素:来自日本试验就绪队列的经验教训。

Factors affecting participation in web-based Alzheimer's questionnaire surveys: Lessons from the Japanese trial-ready cohort.

作者信息

Nakashima Saki, Sato Kenichiro, Niimi Yoshiki, Toda Tatsushi, Iwatsubo Takeshi

机构信息

Department of Neurology, Graduate School of Medicine, The University of Tokyo, Tokyo, Japan.

Department of Neuropathology, Graduate School of Medicine, The University of Tokyo, Tokyo, Japan.

出版信息

JAR Life. 2025 Mar 3;14:100008. doi: 10.1016/j.jarlif.2025.100008. eCollection 2025.

DOI:10.1016/j.jarlif.2025.100008
PMID:40115874
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11925097/
Abstract

BACKGROUND

Web-based approach is considered helpful for the research focused on screening and early detection of individuals with preclinical Alzheimer's disease (AD); obtaining sufficient responses is critical to the success of such online study.

OBJECTIVES

This study examined factors influencing response rates to an online survey about disease-modifying drugs for AD among participants in the Japanese Trial-Ready Cohort (J-TRC) webstudy.

DESIGN

This was a retrospective observational study.

SETTINGS

Online survey in Japan using Google Forms.

PARTICIPANTS

We enrolled the eligible J-TRC webstudy participants who had registered before September 2023. We sent them an invitation e-mail including a questionnaire web address on November-December 2023, in order to conduct an online survey regarding their perceptions of disease-modifying therapy drug that was approved in July 2023, Japan.

MEASUREMENTS

We analyzed the impact of mailed day of the week (DOW), participant gender, age, employment status, and educational background with/without response to the invitation, quantified by the odds ratio of response.

RESULTS

Among approximately 10,400 J-TRC web study participants who sent invitation emails, the overall response rate was approximately 20 %, without significant influence depending on the DOW when the survey invitation was sent. Individuals who were older (50s-70s), retired, or had higher education levels were significantly more likely to respond, regardless of the DOW. Differences in response rates by sex/gender were observed, but were largely influenced by the employment status.

CONCLUSIONS

In order to improve response rates and enhance data quality, these findings provide valuable insights for optimizing the design of future online studies/surveys in the field of AD and dementia, particularly for targeting cognitively unimpaired middle-aged and older populations.

摘要

背景

基于网络的方法被认为有助于针对临床前阿尔茨海默病(AD)个体的筛查和早期检测的研究;获得足够的回复对于此类在线研究的成功至关重要。

目的

本研究调查了影响日本试验就绪队列(J-TRC)网络研究参与者对AD疾病修饰药物在线调查回复率的因素。

设计

这是一项回顾性观察研究。

设置

在日本使用谷歌表单进行在线调查。

参与者

我们招募了在2023年9月之前注册的符合条件的J-TRC网络研究参与者。2023年11月至12月,我们向他们发送了一封包含问卷网址的邀请电子邮件,以就他们对2023年7月在日本获批的疾病修饰治疗药物的看法进行在线调查。

测量

我们分析了一周中的邮寄日期(DOW)、参与者性别、年龄、就业状况和教育背景对邀请回复与否的影响,通过回复优势比进行量化。

结果

在发送邀请电子邮件的约10400名J-TRC网络研究参与者中,总体回复率约为20%,发送调查邀请时的DOW对回复率没有显著影响。年龄较大(50多岁至70多岁)、退休或教育水平较高的个体无论DOW如何,回复的可能性显著更高。观察到了按性别划分的回复率差异,但在很大程度上受就业状况影响。

结论

为了提高回复率并提升数据质量,这些发现为优化AD和痴呆领域未来在线研究/调查的设计提供了有价值的见解,特别是针对认知未受损的中老年人群体。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/5796/11925097/8a158b86151c/gr2.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/5796/11925097/14b8be99b9dc/gr1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/5796/11925097/8a158b86151c/gr2.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/5796/11925097/14b8be99b9dc/gr1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/5796/11925097/8a158b86151c/gr2.jpg

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本文引用的文献

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Alzheimers Res Ther. 2024 Oct 3;16(1):205. doi: 10.1186/s13195-024-01568-8.
2
Combining plasma Aβ and p-tau217 improves detection of brain amyloid in non-demented elderly.联合检测血浆 Aβ和 p-tau217 可提高对非痴呆老年人脑淀粉样蛋白的检测效果。
Alzheimers Res Ther. 2024 May 23;16(1):115. doi: 10.1186/s13195-024-01469-w.
3
Usability of a Web-Based Registry for Preclinical Alzheimer's Disease: Implications from a Cross-Sectional Online Survey.
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。
J Prev Alzheimers Dis. 2024;11(3):661-671. doi: 10.14283/jpad.2024.48.
4
Understanding Barriers and Facilitators to Signing Up for a Mobile-Responsive Registry to Recruit Healthy Volunteers and Members of Underrepresented Communities for Alzheimer's Disease Prevention Studies.了解健康志愿者和代表性不足社区成员报名参加移动响应注册以参与阿尔茨海默病预防研究的障碍和促进因素。
J Prev Alzheimers Dis. 2023;10(4):865-874. doi: 10.14283/jpad.2023.67.
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Development of a Mobile-First Registry to Recruit Healthy Volunteers and Members of Underrepresented Communities for Alzheimer's Disease Prevention Studies.开发一个以移动设备为优先的注册系统,以招募健康志愿者和代表性不足社区的成员参与阿尔茨海默病预防研究。
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