Usefulness of mobile apps for communication of genetic test results to at-risk family members in a US integrated health system: A qualitative approach from user-testing

摘要

Objective: To assess the usefulness a mobile based application to send genetic test results to at-risk family members in a U.S. integrated health system. Methods: We conducted semi-structured in-person interviews with members of Kaiser Permanente Washington who had enrolled in a prospective study and received genetic test results. Participants were given the task to use the app and comment on the experience. The moderator asked participants to share perspectives on the usefulness of a mobile based app and their lived experiences of sharing their test results with family members. Results: Fourteen study participants who had undergone genetic testing were interviewed. Four primary themes emerged as relevant to the use of mobile-based apps as a tool for communicating genetic test results to at-risk family members: (i) Participants felt a sense of obligation to share positive test results with relatives; (ii) Participants felt that the advantages of using email were similar to those of the app; (iii) Participants felt that younger individuals would be more comfortable with an app; and, (iv) Participants felt they could use the app independently and in their own time. Conclusion: A mobile based app could be used as a tool to improve cascade screening for pathogenic/likely pathogenic test results. The benefits of such a tool are likely greatest among relatives still at the stage of family planning, as well as among family members with strained relationships. There would be minimal burden on the system to offer a mobile based app as a tool. Public interest summary: It is important that when an individual receives genetic testing they inform their family members of the results so that their relatives may also benefit. However, this is not commonly done. We created a mobile app that would help facilitate this communication between family members. In this study, we talked with patients about how they felt about the mobile app and if they would use it for sending their genetic test results to any family members. We found that most patients would use a mobile app for their younger relatives, such as nieces or nephews, or with family members with whom they have little contact. While a mobile app might not be the best option in all circumstances, we show that it could be offered as an additional tool to help increase the number of relatives who are informed about their need for genetic testing. (c) 2021 Fellowship of Postgraduate Medicine. Published by Elsevier Ltd. All rights reserved.