‘Your hopes can run away with your realistic expectations’: a qualitative study of women and men’s decision-making when undergoing multiple cycles of IVF

Abstract

Abstract STUDY QUESTION What are the factors that contribute to the decision to continue or stop IVF treatment after multiple unsuccessful cycles? SUMMARY ANSWER Factors contributing to the decision included external factors, such as their doctor’s guidance, success rates, the outcomes of previous cycles and anecdotal stories of success, as well as emotional and cognitive drivers, including perception of success, hope and fear of regret. WHAT IS KNOWN ALREADY Infertility affects about one in six Australian couples of reproductive age. Regarding IVF, some couples with a good prognosis drop out of treatment prematurely, whilst others continue for multiple cycles, despite limited chances of success. Little is known about what factors contribute to the decision to continue IVF after multiple failed cycles. STUDY DESIGN, SIZE, DURATION Semi-structured face-to-face and telephone interviews were conducted with 22 participants. Interviews were audio-recorded, transcribed and analysed thematically using Framework analysis. PARTICIPANTS/MATERIALS, SETTING, METHODS Doctors and nurses at an Australian private fertility clinic recruited individuals and/or couples who had undergone three or more complete unsuccessful cycles of IVF. MAIN RESULTS AND THE ROLE OF CHANCE The majority of participants had decided to or were leaning towards continuing treatment. Participants expressed a range of common factors important in their decision-making, which were evident both within and across couples. For most, their doctor’s advice and hope were key factors influencing their decision. Most participants expressed they would continue as long as there was a chance of success and until their doctor advised otherwise. Other factors included participants’ perception of their likelihood of success, hearing anecdotal stories of success after multiple cycles, positive outcomes of previous cycles and fear of regret. LIMITATIONS, REASONS FOR CAUTION The sample was highly educated and recruited from one private Australian fertility clinic only. Many participants were also couples, which may have resulted in more homogenous data as they shared the same diagnosis for infertility and outcomes of previous cycles. Factors influencing the decision to continue or stop may differ in different sociodemographic populations and in other healthcare systems. WIDER IMPLICATIONS OF THE FINDINGS Given the important role of the doctor’s guidance and patients’ own perceptions of their likelihood of success, which they tended to overestimate, it is vital that fertility specialists give accurate and transparent information regarding their likelihood of success and continue to regularly communicate this throughout the IVF journey. Anecdotal stories of success against the odds appeared to be influential in the decision to continue and underpinned unrealistic perceptions of possible success. More personalized, cumulative estimates of likelihood of success may help couples with their decision-making as well as with discussions about ending treatment or setting a limit before commencing IVF. STUDY FUNDING/COMPETING INTEREST(S) The study was funded by the National Health and Medical Research Council (NHMRC) Program Grant (APP1113532). No further competing interests exist.