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一款用于产前筛查共同决策的分析型移动应用程序:一项混合方法研究的方案

An Analytical Mobile App for Shared Decision Making About Prenatal Screening: Protocol for a Mixed Methods Study.

作者信息

Abbasgholizadeh Rahimi Samira, Archambault Patrick M, Ravitsky Vardit, Lemoine Marie-Eve, Langlois Sylvie, Forest Jean-Claude, Giguère Anik M C, Rousseau François, Dolan James G, Légaré France

机构信息

Department of Family Medicine, McGill University, Montreal, QC, Canada.

Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, QC, Canada.

出版信息

JMIR Res Protoc. 2019 Oct 8;8(10):e13321. doi: 10.2196/13321.

Abstract

BACKGROUND

Decisions about prenatal screening to assess the risk of genetic conditions such as Down syndrome are complex and should be well informed. Moreover, the number of available tests is increasing. Shared decision making (SDM) about testing could be facilitated by decision aids powered by mobile technology.

OBJECTIVE

In this mixed methods study, we aim to (1) assess women's needs and preferences regarding using an app for considering prenatal screening, (2) develop a decision model using the analytical hierarchy process, and (3) develop an analytical app and assess its usability and usefulness.

METHODS

In phase 1, we will assess the needs of 90 pregnant women and their partners (if available). We will identify eligible participants in 3 clinical sites (a midwife-led birthing center, a family practice clinic, and an obstetrician-led hospital-based clinic) in Quebec City and Montreal, Canada. Using semistructured interviews, we will assess participants' attitudes toward mobile apps for decision making about health, their current use of apps for health purposes, and their expectations of an app for prenatal testing decisions. Self-administered questionnaires will collect sociodemographic information, intentions to use an app for prenatal testing, and perceived importance of decision criteria. Qualitative data will be transcribed verbatim and analyzed thematically. Quantitative data will be analyzed using descriptive statistics and the analytic hierarchy process (AHP) method. In phase 2, we will develop a decision model using the AHP whereby users can assign relative importance to criteria when deciding between options. We will validate the model with potential users and a multidisciplinary team of patients, family physicians, primary care researchers, decision sciences experts, engineers, and experts in SDM, genetics, and bioethics. In phase 3, we will develop a prototype of the app using the results of the first 2 phases, pilot test its usefulness and usability among a sample of 15 pregnant women and their partners (if available), and improve it through 3 iterations. Data will be collected with a self-administered questionnaire. Results will be analyzed using descriptive statistics.

RESULTS

Recruitment for phase 1 will begin in 2019. We expect results to be available in 2021.

CONCLUSIONS

This study will result in a validated analytical app that will provide pregnant women and their partners with up-to-date information about prenatal screening options and their risks and benefits. It will help them clarify their values and enable them to weigh the options to make informed choices consistent with their preferences and values before meeting face-to-face with their health care professional. The app will be easy to update with the latest information and will provide women with a user-friendly experience using their smartphones or tablets. This study and the resulting app will contribute to high-quality SDM between pregnant women and their health care team.

INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/13321.

摘要

背景

关于产前筛查以评估诸如唐氏综合征等遗传疾病风险的决策十分复杂,且应基于充分的信息。此外,可用检测的数量在不断增加。由移动技术驱动的决策辅助工具可促进关于检测的共同决策(SDM)。

目的

在这项混合方法研究中,我们旨在(1)评估女性在使用应用程序考虑产前筛查方面的需求和偏好,(2)使用层次分析法开发一个决策模型,以及(3)开发一个分析应用程序并评估其可用性和实用性。

方法

在第1阶段,我们将评估90名孕妇及其伴侣(如有)的需求。我们将在加拿大魁北克市和蒙特利尔的3个临床地点(一个由助产士主导的分娩中心、一个家庭医疗诊所和一个由产科医生主导的医院诊所)确定符合条件的参与者。通过半结构化访谈,我们将评估参与者对用于健康决策的移动应用程序的态度、他们当前用于健康目的的应用程序使用情况,以及他们对用于产前检测决策的应用程序的期望。自行填写的问卷将收集社会人口统计学信息、使用应用程序进行产前检测的意向,以及决策标准的感知重要性。定性数据将逐字转录并进行主题分析。定量数据将使用描述性统计和层次分析法(AHP)进行分析。在第2阶段,我们将使用AHP开发一个决策模型,用户在选项之间进行决策时可以为标准分配相对重要性。我们将与潜在用户以及由患者、家庭医生、初级保健研究人员、决策科学专家、工程师以及SDM、遗传学和生物伦理方面的专家组成的多学科团队一起验证该模型。在第3阶段,我们将使用前两个阶段的结果开发应用程序的原型,在15名孕妇及其伴侣(如有)的样本中进行试点测试其有用性和可用性,并通过3次迭代进行改进。数据将通过自行填写的问卷收集。结果将使用描述性统计进行分析。

结果

第1阶段的招募将于2019年开始。我们预计结果将于2021年可得。

结论

本研究将产生一个经过验证的分析应用程序,该应用程序将为孕妇及其伴侣提供有关产前筛查选项及其风险和益处的最新信息。它将帮助他们明确自己的价值观,并使他们能够在与医疗保健专业人员面对面会面之前权衡各种选项,以便根据自己的偏好和价值观做出明智的选择。该应用程序将易于更新最新信息,并将为女性提供使用智能手机或平板电脑的用户友好体验。这项研究以及由此产生的应用程序将有助于孕妇与其医疗保健团队之间的高质量SDM。

国际注册报告识别码(IRRID):DERR1-10.2196/13321。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/208f/6913686/0417c4df63af/resprot_v8i10e13321_fig1.jpg

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