Sarah Munro1, Julie Sou2, Wei Zhang3, Tima Mohammadi2, Logan Trenaman3, Sylvie Langlois4, Aslam H Anis5. 1. Department of Family Practice, University of British Columbia, Canada; Centre for Health Evaluation and Outcome Sciences (CHÉOS), St. Paul's Hospital, Canada. 2. Centre for Health Evaluation and Outcome Sciences (CHÉOS), St. Paul's Hospital, Canada. 3. Centre for Health Evaluation and Outcome Sciences (CHÉOS), St. Paul's Hospital, Canada; School of Population and Public Health, University of British Columbia, Canada. 4. Department of Medical Genetics, University of British Columbia, Canada. 5. Centre for Health Evaluation and Outcome Sciences (CHÉOS), St. Paul's Hospital, Canada; School of Population and Public Health, University of British Columbia, Canada. Electronic address: aslam.anis@ubc.ca.
Abstract
BACKGROUND: While discrete choice experiments (DCEs) are well established methods to ascertain patient preferences, there is limited literature describing use of qualitative methods in DCE design. AIM: This article provides a case study of the qualitative research process for developing the conceptual attributes for a DCE for prenatal screening and diagnosis. METHODS: Participants were recruited through posters and social media. Four in-depth, semi-structured focus groups with pregnant women and their partners/support people were conducted in Metro Vancouver. FINDINGS: Our analysis indicates that choosing prenatal screening and diagnosis involves four intertwined decisions: whether to undergo screening and testing, which screening test to take, which diagnostic test to take, and what to do with a positive diagnosis. The factors that are important to women and their partners vary depending on the decision and include: time of diagnosis, information on conditions tested, false positives, cost, the invasiveness of the test, and potential harm to woman and baby. DISCUSSION: Findings suggest that certain attributes were more salient for screening versus diagnostic tests. Preferences were often shaped by a woman's perceived ability to care for a child with a genetic anomaly, personal risk factors, parity, views on termination, and perceptions on public or private coverage. Participants valued mental well-being and demonstrated a willingness to trade-off on certain attributes in order to minimize stress or anxiety during pregnancy. CONCLUSION: Study findings will be used to inform DCE attributes, levels, and choice questions. Findings will be important for policy decisions surrounding prenatal testing.
BACKGROUND: While discrete choice experiments (DCEs) are well established methods to ascertain patient preferences, there is limited literature describing use of qualitative methods in DCE design. AIM: This article provides a case study of the qualitative research process for developing the conceptual attributes for a DCE for prenatal screening and diagnosis. METHODS:Participants were recruited through posters and social media. Four in-depth, semi-structured focus groups with pregnant women and their partners/support people were conducted in Metro Vancouver. FINDINGS: Our analysis indicates that choosing prenatal screening and diagnosis involves four intertwined decisions: whether to undergo screening and testing, which screening test to take, which diagnostic test to take, and what to do with a positive diagnosis. The factors that are important to women and their partners vary depending on the decision and include: time of diagnosis, information on conditions tested, false positives, cost, the invasiveness of the test, and potential harm to woman and baby. DISCUSSION: Findings suggest that certain attributes were more salient for screening versus diagnostic tests. Preferences were often shaped by a woman's perceived ability to care for a child with a genetic anomaly, personal risk factors, parity, views on termination, and perceptions on public or private coverage. Participants valued mental well-being and demonstrated a willingness to trade-off on certain attributes in order to minimize stress or anxiety during pregnancy. CONCLUSION: Study findings will be used to inform DCE attributes, levels, and choice questions. Findings will be important for policy decisions surrounding prenatal testing.