Cameron B Haas1,2, Aaron Scrol1, Chethan Jujjavarapu3, Gail P Jarvik4, Nora B Henrikson1. 1. Kaiser Permanente Washington Health Research Institute, Seattle, WA. 2. Department of Epidemiology, School of Public Health, University of Washington, Seattle, WA. 3. Department of Biomedical Informatics and Medical Education, School of Medicine, University of Washington, Seattle, Washington, USA. 4. Departments of Medicine (Medical Genetics) and Genome Sciences, University of Washington School of Medicine, Seattle, WA.
Abstract
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.
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.
Entities:
Keywords:
Cascade testing; Communication; Genetic testing; Mhealth; Mobile app
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