Perspectives of 281 patients with Mayer-Rokitansky-Küster-Hauser Syndrome on uterine transplantation

Nicole Fischer; Helen Xun; Amy Lossie; Darya Fadavi; Halley Darrach; Pooja Yesantharao; Franca Kraenzlin; Bhuchitra Singh; Justin M Sacks; James H Segars

doi:10.1016/j.fertnstert.2020.10.044

Perspectives of 281 patients with Mayer-Rokitansky-Küster-Hauser Syndrome on uterine transplantation

Fertil Steril. 2021 Apr;115(4):1074-1083. doi: 10.1016/j.fertnstert.2020.10.044. Epub 2021 Jan 16.

Authors

Affiliations

¹ Department of Obstetrics and Gynecology, Division of Reproductive Sciences & Women's Health Research, Johns Hopkins Hospital, Baltimore, Maryland.
² Department of Plastic and Reconstructive Surgery, Johns Hopkins Hospital, Baltimore, Maryland.
³ Beautiful You MRKH Foundation, Silver Spring, Maryland.
⁴ Department of Plastic and Reconstructive Surgery, Johns Hopkins Hospital, Baltimore, Maryland; Division of Plastic and Reconstructive Surgery, Washington University School of Medicine in St. Louis, St. Louis, Missouri.
⁵ Department of Obstetrics and Gynecology, Division of Reproductive Sciences & Women's Health Research, Johns Hopkins Hospital, Baltimore, Maryland. Electronic address: jsegars2@jhmi.edu.

PMID: 33468312
DOI: 10.1016/j.fertnstert.2020.10.044

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.

Keywords: MRKH; Mayer−Rokitansky−Küster−Hauser syndrome; Müllerian agenesis; uterine factor infertility; uterine transplantation.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

46, XX Disorders of Sex Development / epidemiology
46, XX Disorders of Sex Development / psychology*
46, XX Disorders of Sex Development / surgery*
Adolescent
Adult
Congenital Abnormalities / epidemiology
Congenital Abnormalities / psychology*
Congenital Abnormalities / surgery*
Cross-Sectional Studies
Female
Humans
Infertility, Female / epidemiology
Infertility, Female / psychology*
Infertility, Female / surgery*
Mullerian Ducts / abnormalities*
Mullerian Ducts / surgery
Organ Transplantation / psychology*
Surveys and Questionnaires
Uterus / transplantation*
Young Adult

Supplementary concepts

Mullerian aplasia