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针对弱势群体进行患者偏好研究的基于网络和远程管理的调查所面临的机遇与挑战

Opportunities and Challenges of Web-Based and Remotely Administered Surveys for Patient Preference Studies in a Vulnerable Population.

作者信息

Oliveri Serena, Lanzoni Lucilla, Petrocchi Serena, Janssens Rosanne, Schoefs Elise, Huys Isabelle, Smith Meredith Y, Smith Ian P, Veldwijk Jorien, de Wit G Ardine, Pravettoni Gabriella

机构信息

Applied Research Division for Cognitive and Psychological Science, IEO, European Institute of Oncology IRCCS, Milan, Italy.

Department of Pharmaceutical and Pharmacological Sciences, KU Leuven, Leuven, Belgium.

出版信息

Patient Prefer Adherence. 2021 Nov 15;15:2509-2517. doi: 10.2147/PPA.S327006. eCollection 2021.

Abstract

The application of web-based and remotely administered surveys is becoming increasingly popular due to the fact that it offers numerous advantages over traditional paper-based or computer-based surveys completed in the presence of the researcher. However, it is unclear whether complex preference elicitation tasks administered online in highly vulnerable patient populations are also feasible. This commentary discusses opportunities and challenges of conducting quantitative patient preference studies in lung cancer patients using web-based modes of data collection. We refer to our recent experience in the context of the Patient Preference in Benefit-Risk Assessments during the Drug Life Cycle (PREFER) project. Among the main advantages were the possibility of reaching a wider and geographically distant population in a shorter timeframe while reducing the financial costs of testing, the greater flexibility offered and the reduced burden on the patients. Some limitations were also identified and should be the object of further research, including the potential lack of inclusiveness of the research, the lack of control over who is completing the survey, a poor comprehension of the study material, and ultimately a lower level of engagement with the study. Despite these limitations, experience from the PREFER project suggests that online quantitative methods for data collection may provide a valuable method to explore preferences in vulnerable patient populations beyond the COVID-19 pandemic.

摘要

基于网络和远程管理的调查的应用越来越受欢迎,因为与研究人员在场情况下完成的传统纸质或基于计算机的调查相比,它具有诸多优势。然而,在高度脆弱的患者群体中在线进行复杂的偏好诱导任务是否可行尚不清楚。本评论讨论了使用基于网络的数据收集模式对肺癌患者进行定量患者偏好研究的机遇与挑战。我们参考了我们在药物生命周期效益-风险评估中的患者偏好(PREFER)项目中的近期经验。主要优势包括在更短时间内接触到更广泛且地理位置分散的人群的可能性,同时降低测试的财务成本,提供更大的灵活性并减轻患者负担。还发现了一些局限性,应成为进一步研究的对象,包括研究可能缺乏包容性、对谁在完成调查缺乏控制、对研究材料理解不佳以及最终对研究的参与度较低。尽管存在这些局限性,但PREFER项目的经验表明,在线定量数据收集方法可能为探索新冠疫情之外的脆弱患者群体的偏好提供一种有价值的方法。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/aaa6/8613941/730f488432e4/PPA-15-2509-g0001.jpg

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