Factors influencing patients’ decision-making about preimplantation genetic testing for monogenic disorders

Abstract

Abstract STUDY QUESTION What are the roles of individual and interpersonal factors in couples’ decision-making regarding preimplantation genetic testing for monogenic disorders (PGT-M)? SUMMARY ANSWER Couples’ decision-making regarding PGT-M was associated with individual and interpersonal factors, that is the perceived consistency of information received, satisfaction with information, self-efficacy (individuals’ beliefs in their ability to make decisions), actual knowledge about PGT-M and social support from the partner. WHAT IS KNOWN ALREADY Various factors have been shown to be associated with decision-making regarding PGT-M. However, PGT-M is experienced at an individual level, and to date, no studies have investigated the roles of the above-mentioned individual and interpersonal factors. STUDY DESIGN, SIZE, DURATION This is a cross-sectional study with 279 participants. Participants were recruited through IVFAustralia, Sydney Children’s Hospital and support groups from May 2020 to November 2021. PARTICIPANTS/MATERIALS, SETTING, METHODS Participants were women who had undergone or were considering PGT-M and their partners. Participants were recruited through IVFAustralia, Sydney Children’s Hospital and support groups to complete online questionnaires. Decisional regret, decisional satisfaction and decisional conflict were measured as outcome variables. Multiple linear regressions were performed to examine the association between factors and outcome variables. Mann–Whitney U tests were performed to test the differences between participants who had undergone PGT-M and those who were considering PGT-M. MAIN RESULTS AND THE ROLE OF CHANCE For couples who had undergone PGT-M, decisional regret was significantly negatively associated with perceived consistency of information received (β = −0.26, P < 0.01), self-efficacy (β = −0.25, P < 0.01) and actual knowledge about PGT-M (β = −0.30, P < 0.001), while decisional satisfaction had positive association with satisfaction with information received (β = 0.37, P < 0.001) and self-efficacy (β = 0.24, P < 0.05). For couples who were considering PGT-M, decisional conflict was negatively associated with satisfaction with information received (β = −0.56, P < 0.001). For females who had undergone PGT-M, decisional regret was negatively associated with social support from the partner (β = −0.35, P < 0.05) in addition to perceived consistency of information received (β = −0.24, P < 0.05). In this group, decisional satisfaction was positively associated with women’s satisfaction with the information received (β = 0.34, P < 0.01), social support from the partner (β = 0.26, P < 0.05) and self-efficacy (β = 0.25, P < 0.05). For females who were considering PGT-M, decisional conflict was negatively associated with satisfaction with the information received (β = −0.43, P < 0.01) and social support from the partner (β = −0.30, P < 0.05). This study also identified those aspects of PGT-M that couples felt most concerned about in relation to their decision-making, in particular safety issues such as short- or long-term health problems for the baby and potential harms to the embryos and the mother’s health. The likelihood of getting pregnant and having a baby with a genetic condition being tested for were also important in couples’ decision-making. LIMITATIONS, REASONS FOR CAUTION This study assessed the concerns of couples about having a baby with a variety of genetic conditions. However, condition-specific issues might not be covered. Furthermore, social support from the partner was assessed among females only. Male participants’ perceived social support from their partner and the association between mutual support and decision-making were not assessed due to the absence of dyadic data. WIDER IMPLICATIONS OF THE FINDINGS Results highlight the importance of effective patient education on PGT-M and the need to provide high-quality and consistent information in the context of patient-centred care. Patients are likely to benefit from information that addresses their specific concerns in relation to PGT-M. From females’ perspective, support from partners is essential, and partners should, therefore, be encouraged to participate in all stages of the decision-making process. Suggestions for future studies were made. STUDY FUNDING/COMPETING INTEREST(S) B.M. was funded through a Senior Research Fellowship Level B (ID 1078523) from the National Health and Medical Research Council of Australia. L.C. was supported by a University International Postgraduate Award under the Australian Government Research Training Program (RTP) scholarship. No other funding was received for this study. The authors report no competing interests. TRIAL REGISTRATION NUMBER N/A.