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.


METHODS
Qualitative interview study.


METHODS
Three northern California IVF practices.


METHODS
One hundred six families (110 women and 74 men) with an average of six frozen embryos in storage for 5 years.


METHODS
Three in-depth interviews over 1 year.


METHODS
Thematic analysis of interview transcripts.


RESULTS
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.


CONCLUSIONS
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.
Nachtigall
Robert D
RD
Institute for Health and Aging, Department of Obstetrics, Gynecology, and Reproductive Sciences, University of California, San Francisco, California 94118, USA. robert.nachtigall@ucsf.edu
Mac Dougall
Kirstin
K
Lee
Matthew
M
Harrington
Jennifer
J
Becker
Gay
G
D000328:Adult; D000368:Aged; D000554:Ambulatory Care Facilities / Q000941:ethics; D001755:Blastocyst; D003657:Decision Making; D030881:Disclosure; D019924:Embryo Disposition / Q000941:ethics / Q000523:psychology; D005260:Female; D005307:Fertilization in Vitro / Q000941:ethics / Q000523:psychology; D005615:Freezing; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D010353:Patient Education as Topic / Q000941:ethics; D057240:Patient Preference / Q000706:statistics & numerical data*; D010465:Perception / Q000502:physiology*; D014019:Tissue Donors / Q000941:ethics / Q000523:psychology