OBJECTIVE: Assess patient preferences for information about known and suspected risks of IVF and desired decision-making modelDESIGN: Randomized trialMATERIALS AND METHODS: Couples seeking IVF received 2 ASRM handouts on multiples or a brief phone call plus new booklets at a 7th grade reading level on the embryo transfer decision (health risks of multiples, live birth vs multiples rates by woman's age and # embryos transferred and ASRM guidelines), possible IVF risks (low birth weight in IVF singletons and scientific concerns that ICSI might lead to inherited infertility or IVF might increase the risk for imprinting disorders). Participants completed 3 surveys and a semi-structured interview.RESULTS: Among the 117 women patients and 94 male partners, 84 (71.8%) and 65 (67.7%), respectively, wanted to be told about rare side effects; 65 (69.1%) and 50 (42.7%), respectively, wanted to be told about side effects that are possible but unproven. When asked during the interview about being told of a side effect that has only been proven in mice, participants made comments such as, “I'd want to know even if it was a mouse so that I can at least be prepared if it would happen to me.” Wanting to be told about all possible side effects was associated with older age of the woman, baseline preference for having twins or triplets, transferring >2 embryos, receiving care in Chicago vs Wichita, KS and underestimating medical problems experienced by twins. Our booklet on the embryo transfer decision was ranked as more important for IVF patients than the ASRM material on multiples (71.7% vs 45.0% of women strongly agreed the respective handout is important, P=.012). Nearly all (91.4%) patients wanted to make their treatment decisions jointly with the IVF team rather than having the IVF team make these decisions.CONCLUSIONS: The findings suggest that a large proportion of IVF patients want to know about rare side effects and those that are possible but not conclusively proven, and want shared decision-making. OBJECTIVE: Assess patient preferences for information about known and suspected risks of IVF and desired decision-making model DESIGN: Randomized trial MATERIALS AND METHODS: Couples seeking IVF received 2 ASRM handouts on multiples or a brief phone call plus new booklets at a 7th grade reading level on the embryo transfer decision (health risks of multiples, live birth vs multiples rates by woman's age and # embryos transferred and ASRM guidelines), possible IVF risks (low birth weight in IVF singletons and scientific concerns that ICSI might lead to inherited infertility or IVF might increase the risk for imprinting disorders). Participants completed 3 surveys and a semi-structured interview. RESULTS: Among the 117 women patients and 94 male partners, 84 (71.8%) and 65 (67.7%), respectively, wanted to be told about rare side effects; 65 (69.1%) and 50 (42.7%), respectively, wanted to be told about side effects that are possible but unproven. When asked during the interview about being told of a side effect that has only been proven in mice, participants made comments such as, “I'd want to know even if it was a mouse so that I can at least be prepared if it would happen to me.” Wanting to be told about all possible side effects was associated with older age of the woman, baseline preference for having twins or triplets, transferring >2 embryos, receiving care in Chicago vs Wichita, KS and underestimating medical problems experienced by twins. Our booklet on the embryo transfer decision was ranked as more important for IVF patients than the ASRM material on multiples (71.7% vs 45.0% of women strongly agreed the respective handout is important, P=.012). Nearly all (91.4%) patients wanted to make their treatment decisions jointly with the IVF team rather than having the IVF team make these decisions. CONCLUSIONS: The findings suggest that a large proportion of IVF patients want to know about rare side effects and those that are possible but not conclusively proven, and want shared decision-making.