Perspectives of 281 patients with Mayer-Rokitansky-Küster-Hauser Syndrome on uterine transplantation
The results of our analysis demonstrate individuals with Mayer-Rokitansky-Kuster-Hauser syndrome are extremely interested in pursuing uterine transplantation, and raise concern for the potential vulnerability of this patient population.
Published
VOLUME 115, ISSUE 4, P1074-1083
Authors:
Nicole Fischer, M.P.H., Helen Xun, B.S., Amy Lossie, Ph.D., Darya Fadavi, B.S., Halley Darrach, M.D., Pooja Yesantharao, B.S., M.S., Franca Kraenzlin, M.D., Bhuchitra Singh, M.D., M.P.H., M.S., Justin M. Sacks, M.D., M.B.A., FACS, James H. Segars, M.D.
Abstract:
Objectives
To investigate the personal, ethical, and financial perspectives of individuals with Mayer−Rokitansky−Küster−Hauser syndrome (MRKH), a congenital uterine factor infertility condition, regarding uterine transplantation (UTx).
Design
Cross-sectional, quantitative survey.
Setting
A 60-item anonymous electronic questionnaire was disseminated via social media sites.
Patients
International members of the Beautiful You MRKH Foundation.
Interventions
None.
Main Outcome Measures
The survey contained UTx educational materials followed by questions assessing participants’ baseline knowledge, global perceptions, financial concerns, and ethical considerations regarding UTx.
Results
We received 281 responses, with a mean participant age of 28.2 ± 9.8 years. After reviewing the education material, most participants considered receiving a UTx (73%), believed that it should be an option for all women with uterine factor infertility (86%), and believed that it should be covered by health insurance (78%). Respondents perceived the benefits of the procedure to outweigh the risks (67%) and considered it to be an ethical procedure (82%). Almost one-half (49%) were willing to spend more than $10,000 out of pocket to receive the procedure. When asked to rank the risk of UTx to self, donor, and fetus in order of personal importance, 21% ranked their own safety last.
Conclusion
There is a profound desire in the MRKH community for UTx to become more widely available and affordable. MRKH patients may represent a vulnerable population requiring special considerations for informed consent and rigorous evaluation for UTx. Providers caring for MRKH patients should be prepared to provide education about UTx and to thoughtfully engage with news and media outlets to communicate evidence-supported information.
