Research Project
10220958
PROJECT SUMMARY Transmasculine genital reconstruction surgeries (TMGRS), including phalloplasty and metoidioplasty, are increasingly performed and medically necessary for many to facilitate gender identity congruence, however, recent studies demonstrate that up to half of patients in the United States identifying as transgender male or gender non-binary have uncertainty or decisional conflict surrounding these procedures. These surgeries require multiple, complex, decisions by patients including surgical timing, whether to have removal of internal reproductive organs (vagina, uterus, and ovaries), whether to plan for future fertility, what type of genital reconstruction to have (metoidioplasty versus phalloplasty); all of which have lasting implications for future fertility, urinary and sexual function. Furthermore, TMGRS are associated with a high risk of costly urologic complications including up to 50% urethral stricture and fistula rate potentially requiring repeat procedures, prolonged catheterization, genitourinary infection, and lower urinary tract compromise. In these complex, preference-sensitive treatment decisions it is paramount to understand patients? decisional needs to empower them to make quality decisions that align with their personal values and goals. However, there is a lack of understanding of patients? decisional needs and factors contributing to decisional conflict surrounding TMGRS. Given the high rate of uncertainty, it follows that there is a lack of TMGRS decision support in the U.S. which may lead to poor quality decisions, further adding to existing transgender social, emotional, and health disparities. In this study, we propose to use triangulation mixed methods grounded in the Ottawa Decision Support Framework (ODSF) (1) to explore patients? decisional needs and factors potentially contributing to decisional conflict in TMGRS decision-making in both patients (who are future possible, scheduled for, or recently undergone TMGRS) and providers. We will utilize semi-structured interviews with patients and providers to explore ODSF constructs contributing to decisional conflict including lack of knowledge of procedural risk, benefits, and alternatives; lack of clarity with personal values and goals of care; poor health, and lack of support and stratify common themes by stage of decision-making and by patients and providers. Additionally, we will (2) develop a preliminary decision aid prototype drawing on content developed by literature review, expert reconstruction surgeon panel, multi-specialty transgender care providers, and patients to assist and empower patients in TMGRS decision-making. We will leverage experts in transgender genital reconstruction, qualitative mixed methods research, and decision aid creation to carry out this work. Successful completion of this study will contribute to a better understanding of TMGRS decisional needs and the development of a patient-centered decision aid prototype designed to increase knowledge, reduce decisional conflict, improve decisional quality, and inform a future prospective study evaluating the broad acceptability, feasibility, and efficacy of the TMGRS decision aid.
