JMIR Publications

ABSTRACT

Background:

Decisions about prenatal screening to assess the risk of genetic conditions such as Down syndrome are complex, and should be made truly informed—as an ethical requirement. Moreover, the number of available tests is increasing. Decision support empowered by mobile technology could facilitate shared decision-making.

Objective:

We aim to: (i) assess the needs and preferences of pregnant women using an app for deciding about prenatal screening; (ii) develop a decision model using the analytical hierarchy process; and (iii) develop an analytical app and assess its usability and usefulness.

Methods:

In Phase 1 of our study, we will assess the needs of 90 pregnant women and their partners (if available) regarding the use of an app for information-seeking and decision-making about prenatal screening. We will identify eligible women and their partners in three clinical sites (a midwife-led birthing centre, a family practice clinic and an obstetrician-led hospital-based clinic) in Quebec City and Montreal (total = six sites). Using self-administered questionnaires and semi-structured interviews, we will assess participants’ attitudes towards and preferences regarding mobile apps for decision-making about their health in general and about prenatal screening decision-making, their current use of apps for this purpose, and perceived usefulness and expectations of an app for prenatal screening decisions. Quantitative data will be analyzed using descriptive statistics. Qualitative data will be transcribed verbatim and will be analyzed. In Phase 2, we will use the Analytical Hierarchy Process (AHP) to develop a decision model and validate it with potential users and multidisciplinary expert team (family medicine and primary care, decision sciences, engineering, shared decision making, genetics, bioethics). The AHP model will enable users to assign relative importance to factors to be considered when deciding between options. In Phase 3, we will apply user-centred design to develop a prototype of the mobile app using the results of the first two phases. We will pilot test its usefulness and usability among a sample of 15 pregnant women and their partners (if available) and improve it through three 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 the final study results to be available in 2021.

Conclusions:

The results of this study will lead to the development of a validated analytical app that will provide pregnant women and their partners with the most up-to-date information about the various prenatal screening options and their risks and benefits. It will enable them to rate the importance of factors to be considered and make informed choices consistent with their preferences and values before meeting face to face with their health professional. The app will be easy to update with the latest information and will provide patients with a user-friendly experience using their smartphones. This in turn will contribute to high-quality shared decision-making between pregnant women and their healthcare team.