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

ObjectivesTo investigate the personal, ethical, and financial perspectives of individuals with Mayer-Rokitansky-Küster-Hauser syndrome (MRKH), a congenital uterine factor infertility condition, regarding transplantation (UTx).DesignCross-sectional, quantitative survey.SettingA 60-item anonymous electronic questionnaire was disseminated via social media sites.PatientsInternational members Beautiful You MRKH Foundation.InterventionsNone.Main Outcome MeasuresThe survey contained UTx educational materials followed by questions assessing participants’ baseline knowledge, global perceptions, concerns, ethical considerations UTx.ResultsWe received 281 responses, mean participant age 28.2 ± 9.8 years. After reviewing education material, most participants considered receiving (73%), believed that it should be an option for all women (86%), covered health insurance (78%). Respondents perceived benefits procedure to outweigh risks (67%) (82%). Almost one-half (49%) were willing spend more than $10,000 out pocket receive procedure. When asked rank risk self, donor, fetus in order personal importance, 21% ranked their own safety last.ConclusionThere is profound desire community become widely available affordable. patients may represent vulnerable population requiring special informed consent rigorous evaluation UTx. Providers caring prepared provide about thoughtfully engage news outlets communicate evidence-supported information. To (UTx). Cross-sectional, survey. A sites. International Foundation. None. The We last. There