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PROGRESS (Patient-Reported Outcomes of Genital Reconstruction and Experiences of Surgical Satisfaction)

progress-patient-reported-outcomes-of-genital-reconstruction-and-experiences-of-surgical-satisfaction

Researcher bios and how their research backgrounds relate to this study

Leo Rutherford is a trans activist, and PhD candidate currently studying at the University of Victoria, on the traditional territory of the lək̓ʷəŋən peoples. Leo’s work is focused on transgender health and gender-affirming care. He has worked on a number of research projects, including as a Research assistant for TransPulse Canada, and a Mitacs fellow for the Community-Based Research Centre’s Sex Now project. PROGRESS (Patient-Reported Outcomes of Genital Reconstruction and Experiences of Surgical Satisfaction) for metoidioplasty and phalloplasty is Leo’s dissertation project and the first of many more community-focused research project on the topic. Leo hopes his work creates much-needed and invaluable knowledge for the trans community about gender-affirming surgeries

Purpose of this research project

Our goal is to collect data through an online survey developed by and for those who have had phalloplasty and/or metoidioplasty. The survey includes questions about you, your pre-and post surgical experiences and feelings about the surgical and recovery processes. The survey includes questions about you, your pre-and post surgical experiences and feelings about the surgical and recovery processes. Results of the study will be used to inform community members, surgeons, other healthcare providers, and academics about patient experiences of surgical preparation and outcomes.

How this research will help LGBT2SQ people and communities

For some trans and non-binary people, having surgery to alter their genitals is a necessary aspect of their medical transition process. To date, research has mostly focused on outcomes of these surgeries that are most useful to surgeons who conduct them. So, many aspects of surgery important to patients are not well-documented. To fill this gap, and, more importantly, gather information that our community needs about typical outcomes, we created this survey

Participants

We are looking for folks who are able to complete a survey in English, are over the age of majority in their state or province, are trans, non-binary, Two-Spirit or have transitioned and have had any kind of phalloplasty or metoidioplasty from either Canada or the United States.

Compensation

Based on the small budget we have for this project, we were originally going to offer a $10 (CAD) gift to the first 200 participants who took this survey. We ‘soft launched’ the survey in March 2022 and received an unexpectedly large number of robots (bot) responses to our survey which we believe is because of our offer of the $10 gift card. We then found out this type of survey fraud (seeking gift cards) is very common right now and is impacting research on our community. We deeply care about collecting data about the real experience of our community members and believe continuing to offer gift cards would lead to more bot survey completion that would jeopardize the truthfulness of the data we collect. The $2000 we were going to spend on gift cards will be invested in our community in several other ways instead. We will continue to support the trans members of this project by offering payment for all time they spend working on this project. We will create knowledge translation outputs that are community-focused including infographics, vlogs, podcasts, and workshops for those interested in pursuing these surgeries. Near the end of our data collection, we will put out a call for art related to topics included in our survey that will be featured in community reports we create. We will compensate 5 artists $200 (CAD) for one piece of art and will prioritize artists who are people of colour, are neurodivergent, have disabilities and/or have uncommon surgical experiences (if they choose to disclose such information). We are exploring additional ways to fund community members such as offering compensation to attend our workshops or designing other knowledge translation (KT) products. We will also apply for additional KT grants to support the development of a data dashboard where community members can access data visualizations at any time.

Mitigation measures

All questions are optional; participants can skip any question you don’t want to answer. All responses are anonymous, no personal contact information or details like name, address, phone number or email will be collected.

Promoting the Study

We are promoting this study primarily on social media and through networks related to trans health.

RainbowHealthOntario @RainbowHealthOn Jun 27

The RHO #PrideMonth promo runs until June 30! Take our course 2SLGBTQ Foundations, a prerequisite for all our cours… twitter.com/i/web/status/1…

RainbowHealthOntario @RainbowHealthOn Jun 23

Consultation from Rainbow Health Ontario helped inform the creation of a 2SLGBTQ senior care tool kit, released tod… twitter.com/i/web/status/1…

RainbowHealthOntario @RainbowHealthOn Jun 23

Check out this insightful conversation on 2SLGBTQ health care from the OMA. This Twitter Space is the follow-up to… twitter.com/i/web/status/1…