Usability of a Web-Based Registry for Preclinical Alzheimer’s Disease: Implications from a Cross-Sectional Online Survey - 21/11/24

Doi : 10.14283/jpad.2024.48 
Kenichiro Sato 1, 2, , Y. Niimi 2, R. Ihara 3, K. Suzuki 4, A. Iwata 3, Takeshi Iwatsubo 1, 2,
1 Department of Neuropathology, Graduate School of Medicine, The University of Tokyo, Hongo 7-3-1, Bunkyo-ku, 113-8655, Tokyo, Japan 
2 Unit for Early and Exploratory Clinical Development, The University of Tokyo Hospital, Hongo 7-3-1, Bunkyo-ku, 113-8655, Tokyo, Japan 
3 Department of Neurology, Tokyo Metropolitan Geriatric Medical Center Hospital, Sakaecho 35-2, Itabashi-ku, 173-0015, Tokyo, Japan 
4 Division of Neurology, Internal Medicine, National Defense Medical College, Namiki 3-2, 359-8513, Tokorozawa, Saitama, Japan 

f iwatsubo@m.u-tokyo.ac.jp iwatsubo@m.u-tokyo.ac.jp a kenisatou@m.u-tokyo.ac.jp kenisatou@m.u-tokyo.ac.jp

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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.

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Key words : System usability scale, online survey, trial-ready cohort, preclinical Alzheimer’s disease


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Vol 11 - N° 3

P. 661-671 - Maggio 2024 Ritorno al numero
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