Framing the diagnosis and treatment of absolute uterine factor infertility: Insights from in-depth interviews with uterus transplant trial participants

Abstract

Background: Despite procedural innovations and increasing numbers of uterus transplant attempts worldwide, the perspectives of uterus transplant (UTx) trial participants are lacking. Methods: We conducted a mixed-methods study with women with absolute uterine factor infertility (AUFI). Participants included women who had previously contacted the Cleveland Clinic regarding the Uterine Transplant Trial and met the initial eligibility criteria for participation. In-depth interviews were conducted in conjunction with FertiQoL, a validated and widely used tool to measure the impact of infertility on the quality of life of infertility patients. Results: All (n = 19) rated their overall health as good; some experienced grief and social isolation. AUFI is a life-framing experience that influences acceptance by family, partners, peers, and one’s self. UTx is a means to gain control of reproductive autonomy. UTx allows family-building and the ability to play an active role in prenatal health and well-being. Establishing and maintaining a supportive relationship is a key issue of AUFI and when considering UTx. Risks of UTx are perceived relative to risks to self/child/family posed by adoption/surrogacy. Participants had no overall preference regarding living or deceased donor. Conclusions: The ways in which women with AUFI conceptualize this condition in their lives and choices around UTx and participating in a study of the procedure are multifaceted and textured. These perspectives are critical to understanding its ethical, legal, and social implications.

Keywords:

• Uterine factor infertility
• uterine transplantation
• ethical issues
• transplantation
• reproductive medicine
• research

Acknowledgments

This study was completed with support of the Ob/Gyn and Women’s Health Institute at Cleveland Clinic. No outside funds were sought for this study.

Author contributions

E. G. Richards: study design, data collection, data interpretation, article preparation. P. K. Agatisa: study design, data collection, conduct of the interviews, data interpretation, article preparation. A. C. Davis: data collection, data interpretation, article preparation. R. Flyckt: data collection, data interpretation, article preparation. H. Mabel: study design, data collection, article preparation. T. Falcone: data interpretation, article preparation. A. Tzakis: data interpretation, article preparation. R. M. Farrell: study design, data collection, oversight of the interviews, data interpretation, article preparation.

Conflicts of interest

Authors Davis, Falcone, Farrell, Flyckt, Mabel, Richards, and Tzakis are co-investigators for a research protocol entitled "Uterine transplantation for the treatment of uterine factor infertility" (ClinicalTrials.gov identifier NCT02573415) at Cleveland Clinic. No part of these authors' compensation is derived from this protocol.

Ethical approval

This study was approved by the institutional review board at the Cleveland Clinic.

Additional information

Funding

This study was completed with support of the Department of Ob/Gyn and Women’s Health Institute at Cleveland Clinic. No outside funds were sought for this study.