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远程数字健康研究中参与者的招募和保留:范围综述和框架建议。

Enrollment and Retention of Participants in Remote Digital Health Studies: Scoping Review and Framework Proposal.

机构信息

Institute for Implementation Science in Healthcare, University of Zurich, Zurich, Switzerland.

Digital Society Initiative, University of Zurich, Zurich, Switzerland.

出版信息

J Med Internet Res. 2022 Sep 9;24(9):e39910. doi: 10.2196/39910.

DOI:10.2196/39910
PMID:36083626
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9508669/
Abstract

BACKGROUND

Digital technologies are increasingly used in health research to collect real-world data from wider populations. A new wave of digital health studies relies primarily on digital technologies to conduct research entirely remotely. Remote digital health studies hold promise to significant cost and time advantages over traditional, in-person studies. However, such studies have been reported to typically suffer from participant attrition, the sources for which are still largely understudied.

OBJECTIVE

To contribute to future remote digital health study planning, we present a conceptual framework and hypotheses for study enrollment and completion. The framework introduces 3 participation criteria that impact remote digital health study outcomes: (1) participant motivation profile and incentives or nudges, (2) participant task complexity, and (3) scientific requirements. The goal of this study is to inform the planning and implementation of remote digital health studies from a person-centered perspective.

METHODS

We conducted a scoping review to collect information on participation in remote digital health studies, focusing on methodological aspects that impact participant enrollment and retention. Comprehensive searches were conducted on the PubMed, CINAHL, and Web of Science databases, and additional sources were included in our study from citation searching. We included digital health studies that were fully conducted remotely, included information on at least one of the framework criteria during recruitment, onboarding or retention phases of the studies, and included study enrollment or completion outcomes. Qualitative analyses were performed to synthesize the findings from the included studies.

RESULTS

We report qualitative findings from 37 included studies that reveal high values of achieved median participant enrollment based on target sample size calculations, 128% (IQR 100%-234%), and median study completion, 48% (IQR 35%-76%). Increased median study completion is observed for studies that provided incentives or nudges to extrinsically motivated participants (62%, IQR 43%-78%). Reducing task complexity for participants in the absence of incentives or nudges did not improve median study enrollment (103%, IQR 102%-370%) or completion (43%, IQR 22%-60%) in observational studies, in comparison to interventional studies that provided more incentives or nudges (median study completion rate of 55%, IQR 38%-79%). Furthermore, there were inconsistencies in measures of completion across the assessed remote digital health studies, where only around half of the studies with completion measures (14/27, 52%) were based on participant retention throughout the study period.

CONCLUSIONS

Few studies reported on participatory factors and study outcomes in a consistent manner, which may have limited the evidence base for our study. Our assessment may also have suffered from publication bias or unrepresentative study samples due to an observed preference for participants with digital literacy skills in digital health studies. Nevertheless, we find that future remote digital health study planning can benefit from targeting specific participant profiles, providing incentives and nudges, and reducing study complexity to improve study outcomes.

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3564/9508669/74e16ea7cd50/jmir_v24i9e39910_fig4.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3564/9508669/c2baaa91b65d/jmir_v24i9e39910_fig1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3564/9508669/d1ed82069808/jmir_v24i9e39910_fig2.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3564/9508669/69278be4db17/jmir_v24i9e39910_fig3.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3564/9508669/74e16ea7cd50/jmir_v24i9e39910_fig4.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3564/9508669/c2baaa91b65d/jmir_v24i9e39910_fig1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3564/9508669/d1ed82069808/jmir_v24i9e39910_fig2.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3564/9508669/69278be4db17/jmir_v24i9e39910_fig3.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/3564/9508669/74e16ea7cd50/jmir_v24i9e39910_fig4.jpg
摘要

背景

数字技术越来越多地用于健康研究,以从更广泛的人群中收集真实世界的数据。一波新的数字健康研究主要依赖数字技术来完全远程进行研究。远程数字健康研究有望在成本和时间上相对于传统的面对面研究具有显著优势。然而,据报道,此类研究通常会出现参与者流失的情况,而对于其原因仍在很大程度上缺乏研究。

目的

为了帮助未来的远程数字健康研究计划,我们提出了一个概念框架和关于研究纳入和完成的假设。该框架提出了 3 个影响远程数字健康研究结果的参与标准:(1)参与者的动机特征和激励或推动因素,(2)参与者的任务复杂性,以及(3)科学要求。本研究的目的是从以人为本的角度为远程数字健康研究的规划和实施提供信息。

方法

我们进行了范围综述,以收集有关远程数字健康研究参与情况的信息,重点关注影响参与者纳入和保留的方法学方面。我们在 PubMed、CINAHL 和 Web of Science 数据库上进行了全面搜索,并从引文搜索中纳入了我们研究中的其他来源。我们纳入了完全远程进行的数字健康研究,在研究的招募、入职或保留阶段,有关于框架标准中的至少一个标准的信息,并纳入了研究纳入或完成结果。对纳入的研究进行了定性分析,以综合研究结果。

结果

我们报告了 37 项纳入研究的定性结果,这些研究显示了基于目标样本量计算的高中位参与者纳入率,128%(IQR 100%-234%),以及中位研究完成率,48%(IQR 35%-76%)。为具有外在动机的参与者提供激励或推动因素的研究观察到中位研究完成率提高(62%,IQR 43%-78%)。在没有激励或推动因素的情况下降低参与者的任务复杂性,并未提高中位研究纳入率(103%,IQR 102%-370%)或完成率(43%,IQR 22%-60%),与提供更多激励或推动因素的干预性研究相比(中位研究完成率为 55%,IQR 38%-79%)。此外,在评估的远程数字健康研究中,完成度的衡量标准不一致,只有大约一半的有完成度衡量标准的研究(14/27,52%)是基于参与者在整个研究期间的保留情况。

结论

很少有研究以一致的方式报告参与因素和研究结果,这可能限制了我们研究的证据基础。我们的评估也可能因观察到数字健康研究中对数字素养技能参与者的偏好而受到发表偏倚或代表性不足的研究样本的影响。尽管如此,我们发现,未来的远程数字健康研究计划可以从针对特定参与者特征、提供激励和推动因素以及降低研究复杂性以改善研究结果中受益。

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