Do you sometimes wish the sensation, function, or appearance of your genitals were different? Or have you previously had genital surgery?
Researchers at NYU Langone Health are conducting a survey that’s designed to better understand the medical and surgical experiences of transgender men and nonbinary people (AFAB). These researchers are a group of surgeons and healthcare providers that includes trans people who belong to the population being studied.
In this interview, Gaines Parker, a research associate at NYU Langone’s Transgender Surgery Program who helped lead the survey design, sheds some light on why this first-of-its-kind survey is so important.
In your call for participants post on Facebook, you mentioned that the idea behind this survey is to “give voice to the things that really matter to us within the academic literature and at scientific conferences.” With regards to genital surgery, how much of a voice have we had up to this point?
Lou Sullivan at home in San Francisco, 1990
© Mariette Pathy Allen
It’s hard for me to put a measure on our voice in the academic literature about surgery. I know that when I was in my personal decision making process, many questions I had about genital surgery could not be answered from my review of the scientific literature. So on the one hand, as a transgender person, I know that we have very much been the “object” of study from cisgender researchers, who imposed their own ideas about what an “ideal” outcome looks like. For instance, the activist Lou Sullivan, who eventually had metoidioplasty surgery, had a very hard time getting access to hormones and surgery because he openly identified as a gay man, and living as a gay man was not something cisgender professionals felt comfortable with as an outcome of transition. How are we supposed to know if these surgeries meet the needs of gay men if openly gay men couldn’t get them in the first place? In recent years there has been a movement within WPATH and other professional spaces to come to terms with this history and to promote transgender professionals as leaders and experts, and to incorporate community-based participatory research practices, which is one of the terms that describes the process of including the community in the research process.
On the other hand, as a researcher, I also want to understand the input we have had (or not had) in context of other types of surgery. It turns out surgery in general is trying to be better about listening to the patient’s perspective. For example, there is a tool “Breast-Q” that asks questions about the patient’s perspective on breast reconstruction surgery after cancer, what the process of having surgery was like, and how it impacted overall life. This tool was a big innovation for the field, and creating it involved a long process of figuring out what mattered to patients and how to ask the right questions. Surgeons want more of these tools, including for genital surgery, but they are made slowly and carefully. This process is just starting for genital surgery, but it is starting. There have also been a few past pieces of research I reviewed while crafting this survey that did directly ask patients what they wanted from phalloplasty and metoidioplasty, and why. These have asked relatively small numbers of people, and usually only people who were already connected to the gender treatment clinics surgeons worked at. So, some patient perspective has been given space, but there is definitely room for more work.
These studies:
van de Grift, T. C., Pigot, G. L. S., Boudhan, S., Elfering, L., Kreukels, B. P. C., Gijs, L. A. C. L., … Mullender, M. G. (2017). A Longitudinal Study of Motivations Before and Psychosexual Outcomes After Genital Gender-Confirming Surgery in Transmen. The Journal of Sexual Medicine, 14(12), 1621–1628. https://doi.org/10.1016/j.jsxm.2017.10.064
Rachlin, K. (1999). Factors Which Influence Individual’s Decisions When Considering Female-To-Male Genital Reconstructive Surgery. International Journal of Transgenderism, 3.
Jacobsson, J., Andréasson, M., Kölby, L., Elander, A., & Selvaggi, G. (2017). Patients’ Priorities Regarding Female-to-Male Gender Affirmation Surgery of the Genitalia—A Pilot Study of 47 Patients in Sweden. The Journal of Sexual Medicine, 14(6), 857–864. https://doi.org/10.1016/j.jsxm.2017.04.005
Hage, J. J., Bout, C. A., Bloem, J. J., & Megens, J. A. (1993). Phalloplasty in female-to-male transsexuals: what do our patients ask for? Annals of Plastic Surgery, 30(4), 323–326.
“Nothing About Us Without Us” is a slogan commonly used to communicate the idea that research about trans people should be conducted by people from within the community. How does having trans people involved in the survey design and analysis help?
I can’t imagine trying to undertake research about something so complicated and intimate without help from a diverse group of people with that experience. I know from answering surveys about my own trans experience, if think that my answers will be used out of context or the right questions aren’t being asked, I won’t finish it. One of this survey’s advisors, Gus Klein, PHD, has experience from working on the National Institute of Health funded Trans Masculine Health Survey, which ultimately got over 2,000 respondents from diverse experiences. Amazing participation like that helps to ensure that the trends that are found are not just by random chance, and help us as data scientists to answer questions about sub-populations. While we want to offer many ways to answer any given question, in a survey with small participation, it’s hard to then draw conclusions about small groups who select specific options. We need trans people involved in the design so that meaningful questions are being asked, more people want to participate, and that participation allows us as researchers to get even more specific and meaningful in the way we can use the resulting data.
While some of survey results will provide quantitative data, such as the number of participants who have had genital surgery, a lot of subjective data will also be generated. What kinds of challenges do researchers face in analyzing such a diverse range of experiences?
We have to offer “open answer” questions, because some important experiences just cannot be summed up with “yes/no” or “a little/very much” answers. The process of analyzing open text is another space where we have to involve the community. Our analysis plan includes using multiple “coders” or people who read the response and add tags (like hashtags on social media) to sort them into categories, identifying themes that come up in multiple responses. These coders make these choices independently at first, then work as a group to resolve any disagreements about meaning. Do not hesitate to ask questions about generic Viagra. I know from being a member of the community that we develop specific language that might not make sense to outsiders, even medical professionals. A word like “packer” might be pretty clear to me, but less clear to a cisgender physician. Or there could be something I assume to be slang that is actually a technical/procedural term I don’t know about because I had a different kind of surgery than the respondent. So it’s important to have multiple community members represented in this portion of the analysis, in addition to medical professionals and others that can read the same statement from multiple perspectives so that we don’t fail to understand an aspect of what is being said. In addition to counting and describing themes, we can also use direct (but not identifiable) quotes along with other kinds of data that can be quantified. So in some ways, subjective responses offer a more rich and complicated kind of analysis, and in other ways, subjective response data can stand on its own without researchers interfering or summarizing.
When will the survey data be accessible to the community and what are the next steps after the data analysis is completed?
The anonymized data that results from the survey will eventually be accessible to the community. Towards the end of 2020 is a realistic timeline for pieces to start to be available- we are already beginning to prepare presentations based on the survey for conferences meant for surgeons and other practitioners in transgender health. These presentations, and work that will be submitted for academic journals, are often both behind a “paywall” of registration for the conference or subscription to the journal. It’s important to me to respect the time and effort the community put in to answering this survey by making sure that whenever possible, publications are “open-access” and circulated back to the community. Additionally, this kind of writing is for an audience with a medical education. So it is also important to translate the findings into different mediums that are less difficult to understand. So look forward to workshops at community conferences and ways to translate these findings into different mediums.
Lastly, how will the survey data help to improve outcomes of genital surgery?
While this information won’t directly lead to a new operative technique or change how an individual’s surgery might go, there are two main goals for this survey:
1) To provide a new source of information about the outcomes of these surgeries. Most genital surgery outcomes data has been both focused on things that can be objectively recorded (such as infections, revision surgeries) and also drawn from within single surgeon’s practices. While primarily recruiting people from the internet is biased in a different way from recruiting from within a surgeon’s practice, our hope is that we can have an interesting conversation about how the findings are different (or not!) from what has been reported before. Additionally, there are some questions we are asking that haven’t ever been reported before in the scientific literature, a small example being sexually transmitted infections after phalloplasty and metoidioplasty. Having even a little new information about sexual health after surgery helps both medical practitioners and patients with making decisions about surgery and taking care of our bodies.
2) To be part of an ongoing effort to figure out what matters to us as genital surgery patients and how to ask us about it. While a tool as reliable and well-made as Breast-Q isn’t going to result from this survey, we’re already working with researchers who are in the process of making these kinds of tools to use information from this survey. For instance, we ask about goal outcomes for genitals, and include open write-in options. By seeing what people write in, we generate new ideas for questions to test. Once we have reliable ways of asking about the patient experience, we can measure different surgery techniques not just by asking “was there an infection?” but also asking “how much better do you feel?” in a way we know gets a consistent set of answers. Being able to measure quality, as we define it, helps to ensure quality surgery is available to us.
Thank you, Gaines!
Take the Survey
The survey is open to any non-op, pre-op, or post-op people who are: assigned female at birth; of trans or nonbinary experience; able to read English; age 18 or older.
The survey is in-depth and will take 45-60 minutes to complete. If you’re unable to finish it in one sitting, you can return to the survey to complete it as long as you don’t clear your browser cache.
