Title: In Reply to “An insider perspective from Mayer-Rokitansky-Küster-Hauser syndrome patients on uterus transplantation”

Authors: Nicole Fischer, MPH1; Helen Xun, BS2; Bhuchitra Singh MD, MPH, MS1; Justin M. Sacks, MD, MBA, FACS3; James H. Segars, MD1

1. Johns Hopkins Hospital, Department of Obstetrics and Gynecology, Division of Reproductive Sciences & Women’s Health Research, 1800 Orleans St, Baltimore, MD, USA 21287


2. Johns Hopkins Hospital, Department of Plastic and Reconstructive Surgery, 1800 Orleans St, Baltimore, MD, USA 21287


3. Washington University School of Medicine in St. Louis, Division of Plastic and Reconstructive Surgery, 1 Brookings Dr, St. Louis, MO, USA 63130

Disclosure(s): The authors have nothing to disclose.

Corresponding author(s):
James H. Segars MD, FACOG

Professor and Director

Division of Reproductive Sciences & Women’s Health Research

Department of Gynecology & Obstetrics

Johns Hopkins School of Medicine

720 Rutland Avenue

Ross Research Building, Room 624

Baltimore, MD, 21205

Ph.: 410-614-2000

Email: jsegars2@jhmi.edu

We thank the authors for their interest and thoughtful review of our recent article1 regarding Mayer-Rokitansky-Küster-Hauser syndrome (MRKH) patient perspectives toward uterine transplantation. The authors make a valuable contribution and raise several important points for further consideration.

The authors discuss the importance of understanding the human experience of those with uterine factor infertility as they navigate their condition and family building options (i.e. gestational surrogacy, adoption, or uterus transplantation). This reflects our own experience. Cumulative evidence suggests the impact of uterine factor infertility on psychosocial well-being is significant.2-4 In addition, the results of our analysis,1 and that of prior work,5 suggest that a considerable proportion of women with uterine factor infertility prefer to give birth to their own genetically related offspring over gestational surrogacy or adoption.5 Providers counseling patients on the procedure should be sensitive to these issues, and psychiatric support for these patients should be prioritized. Indeed, the beneficial role of psychiatric support for both organ transplantation recipients6-8 and fertility treatment patients9 is well established. Psychiatrists may therefore play a vital role in the care for uterine transplant recipients in two ways: addressing the psychological issues related to the infertility condition and tackling transplantation-related issues that could impact health outcomes and quality of life. 

As the authors note, there are limitations to our study. Our sample was limited to individuals with proficient technology skills and health literacy, which may not reflect the general population of MRKH patients. We also reported a low response rate (7.6%) due to our inability to directly quantify the number of individuals who saw the social media advertisement for our survey. We used the number of Facebook followers (n=3,687) as a proxy for the number of individuals who viewed the survey invitation. However, this is likely an overestimation of the number of viewers, and consequently, an underestimation of the true response rate. Important steps to make the survey more generalizable would be to administer it through non-social media routes, ensure that it is at an appropriate reading level, and translate it to non-English languages.

As the authors mention, our survey did not distinguish between participants who already received a uterus transplant and those who are interested in undergoing the procedure. We agree that this is important and advise future surveyors to include such questioning. A future direction for this work could be to survey uterine transplant recipients for their thoughts and reflections regarding the procedure pre- and post-transplant. It would also be interesting to note if the beliefs surrounding the ethics, risks, and benefits of the procedure significantly differed among existing recipients versus those interested in undergoing the procedure. We could also assess for differences in the perspectives of those with acquired versus congenital uterine factor infertility.

The authors accurately note that our educational tool was not validated before use. Important next steps for this work would be to create an online validated uterus transplant education tool for MRKH patients. Development of effective health education tools involves a series of systematic steps including setting education goals, conducting literature reviews, organizing focus groups, selecting content, eliciting expert feedback, and then systematically evaluating the understandability and actionability of the materials.10,11 These efforts should be done in collaboration with the Beautiful You MRKH foundation, the largest international organization for MRKH patients, and perhaps backed by organized women’s health societies such as the American Society for Reproductive Medicine (ASRM) and the American College of Obstetricians and Gynecologists (ACOG). Similar multidisciplinary approaches could also be employed to create provider education materials on how to counsel patients on the procedure.

The authors conclude by discussing the importance of placing the perspectives of MRKH patients and their families at the forefront of conversations about the future of uterus transplantation. We agree wholeheartedly and encourage clinicians and investigators to involve MRKH patients in teams developing patient education materials, procedure protocols, and outcomes research for this novel procedure moving forward. Further work is needed to understand the ways in which individuals with uterine factor infertility conceptualize this condition in their lives and choices surrounding uterine transplantation. These are complex issues that warrant collaboration and multi-faceted solutions. We reiterate our thanks to the authors and look forward to future work on this issue.

References

1. Fischer NM, Xu H, Lossie A, Darrach H, Yesantharao P, Kraenzlin F, Singh B, Sacks J, Segars J. Perspectives of 281 patients with Mayer-Rokitansky-Küster-Hauser syndrome on uterine transplantation. Fertil Steril 2021; in press.


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11. Arora C. Development and Validation of Health Education Tools and Evaluation Questionnaires for Improving Patient Care in Lifestyle Related Diseases. J Clin Diagnostic Res 2017; 11:JE06.