Development of a Decision Aid for Genital Gender-Affirming Surgery in Transmen
Müjde Özer MD; Garry L.S. Pigot MD; Mark-Bram Bouman MD, PhD; Tim C. van de Grift MD, MSc, PhD; Lian Elfering MSc; Norah M. van Mello MD, PhD; Hoda H.M. Al-Itejawi MD; Marlon E. Buncamper MD, PhD; Margriet G. Mullender MBA, PhD
FIRST PUBLISHED: May 31, 2018 – The Journal of Sexual Medicine
With growing societal acceptance of gender variances, the number of patients undergoing treatment for gender dysphoria has increased over the years. One treatment option is gender-affirming surgery (GAS), which aims to remove native reproductive organs and create organs that align with the desired gender. Good urologic and sexual function is an important outcome goal.
Over time, the concept of gender and gender identity has become more fluid. Treatment has become more individualized, with some patients seeking partial treatment in accordance with where they see themselves on the gender spectrum.
For transmen seeking GAS, decisions depend upon the following:
- the feasibility of the surgical technique (the surgeon’s abilities and the patient’s overall health)
- the patient’s wishes and expectations regarding cosmetic results, sexual and urologic function, and fertility
- the risk of complications and the patient’s ability to cope with any problems that arise
Currently, patients’ satisfaction with surgery varies. The goal of this study was to develop an online decision aid for genital surgery in transmen (DA-GST) to assist both transmen and health care providers in shared decision making.
(Note: The latest version of the decision aid is available here.)
Five focus groups that included transmen and healthcare providers met for three to four hours to discuss the creation of a DA-GST. Each group was led by an independent professional moderator.
The participants included 12 transmen who had already had surgery, were considering surgery, or had decided not to have surgery yet. Nine healthcare providers involved with the treatment of gender dysphoria also took part.
The composition of each group varied, but transmen and healthcare providers were included in each.
The participants assessed the DA-GST tool and adaptations were made, resulting in the final, digital version.
Discussions took place as follows:
- Scope. Participants agreed that the DA-GST “should encompass a broad spectrum of motives and possibilities for genital GAS” and focus on “desired outcomes and realistic expectations” but not provide full details about individual procedures.
- Design. Five main themes were determined: outcome, quality of life, environment, sexuality, and beliefs. Participants agreed that the DA-GST should follow multiple surgical options categorized by gynecological procedures [e.g., total laparoscopic hysterectomy and bilateral salpingo-ovariectomy (BSO) combined with top surgery or individual components of this procedure] and reconstructive procedures (e.g., metoidioplasty, phalloplasty). The participants also agreed that the decision aid should include short descriptions of each procedure along with the requirements.
- Content. The groups decided to include only general information, as details can change over time and much depends on individual cases. They also decided not to include quantitative information on outcomes. Relative risks of complications were to be included, however.
The participants discussed appropriate phrasing and terminology. For example, they decided against the terms metoidioplasty and phalloplasty, opting instead for creation of a small penis and creation of a large penis.
The DA-GST was created as a collaborative effort, with transmen sharing their experiences and concerns and healthcare providers explaining different treatment options. Together, the two groups created a decision aid that reflects shared decision-making in five main themes: outcome, quality of life, environment, sexuality, and beliefs.
The DA-GST also addresses the varying degrees of treatment. “Individuals may not necessarily experience dysphoria with certain body parts and/or do not need certain surgeries to affirm their identity,” the authors wrote. “This translates into partial treatment gaining popularity during all phases of treatment.”
Some medical centers may not offer all the procedures discussed. In these cases, healthcare providers should refer patients to other centers if necessary.
The study may be limited by the group that participated and may not incorporate the concerns of all transmen. As a result, the decision aid should evolve over time. Future research may focus on the decision aid’s clinical effectiveness.