What do patients want? Expectations and perceptions of IVF clinic information and support regarding frozen embryo disposition.

OBJECTIVE: To describe frozen embryo holders' expectations and perceptions of IVF clinic information, support, and storage fees and their relevance to embryo disposition decision making. DESIGN: Qualitative interview study. SETTING: Three northern California IVF practices. PATIENT(S): One hundred six families (110 women and 74 men) with an average of six frozen embryos in storage for 5 years. INTERVENTION(S): Three in-depth interviews over 1 year. MAIN OUTCOME MEASURE(S): Thematic analysis of interview transcripts. RESULT(S): Although embryo holders expected that IVF clinics were under obligation to assist in the disposition decision and would be their main source of information, these expectations did not become manifest until years after embryo cryopreservation. Patients expressed a variety of preferences for the timing, format, and content of information and support, ranging from detailed written information to counselor/advocates that could provide logistical guidance and/or psychologic support. Embryo holders perceived an insufficiently defined infrastructure to facilitate donation to other couples, whereas donating to medical research was seen as less complicated and more likely to be encouraged and supported by physicians and clinics. Although increasing storage fees motivated disposition decision making, they could be interpreted as coercive and/or not reflective of actual clinic costs. CONCLUSION(S): Frozen embryo-holding patients' expectations of information and support to assist them with disposition decision making and embryo donation suggests that IVF clinics may benefit from a review of their frozen embryo counseling, storage, and disposition policies and procedures.