An Oregon Health & Science University-led study will evaluate how hospitals and transgender community members can work together to better support patients preparing for gender-affirming surgery — and ultimately improve surgical outcomes.
The Patient Centered Outcomes Research Institute has approved an award of approximately $7 million to OHSU for the five-year study, which will explore how peer support programs can help patients as they await a feminizing genital surgery known as vaginoplasty. The new funding represents one of the largest awards for gender-affirming health care research to date.
“The support of loved ones can help any patient recover after surgery,” said Geolani Dy, M.D., the study’s lead researcher, a surgeon-scientist who provides vaginoplasty procedures, and an associate professor of urology and of plastic and reconstructive surgery in the OHSU School of Medicine. OHSU Transgender Health Program Clinical Manager Amy Penkin, M.S.W., LCSW, is a study co-investigator.
“We know that peer support can be particularly helpful for those receiving gender-affirming care,” Dy continued. “Extra support from trusted peers can help make navigating complex health care systems easier for transgender patients, who often have to wait years before receiving gender-affirming genital surgery — while also managing the stress and trauma associated with being part of a society that often doesn’t accept non-conforming gender expression.”
The research team is exploring whether formal peer support programs that work in tandem with gender-affirming health care institutions can better prepare patients before they undergo vaginoplasty. To study this, the researchers are partnering with Trans Lifeline, a nationwide, trans-run nonprofit that offers emotional and financial support to transgender people.
Trans Lifeline has co-created and will facilitate a virtual peer support program for patients awaiting vaginoplasty at five U.S. hospitals: OHSU, New York University Langone Health, University of Utah Salt Lake City, University of California San Francisco, and Rush University in Chicago. A key study collaborator is The GRACE Center of the University of Washington’s Department of Obstetrics and Gynecology, which will provide data coordination and support stakeholder engagement.
A total of 260 patients will join in the study. Half will participate in the virtual peer support program, while the remaining patients will receive educational materials without formal peer support. Each patient will be followed for up to three years.
Previous research has shown mental health improves when patients can effectively respond to challenges during their health care journey. This study’s participants will be asked to take a series of surveys to measure their feelings regarding their ability to cope with challenges; whether they can meet pre-operative requirements; and numerous other areas, such as mental health, social support and, eventually, surgical outcomes.
While this study focuses on gender-affirming health care, Dy noted that all patients — whether they are transgender, cisgender or nonbinary — can benefit from its findings.
“Research that centers the voices of patients and their communities has great potential to transform health care,” Dy said.
The study is building on other OHSU efforts, including those of the OHSU Transgender Health Program, which was launched in 2015 and provides comprehensive gender-affirming care services for patients of all ages. The program offers peer support, including patient surgery preparation materials that were developed with OHSU patients who have undergone gender-affirming procedures.
It’s also an outcome of the Transgender and Non-Binary Allied Research Collective, which brings together researchers and patients to shape future research related to gender-affirming health care. Co-led by Dy and Penkin, the collaborative has identified peer support and surgery preparation as some of the top research priorities for gender-affirming health care.
This research will be supported by Patient Centered Outcomes Research Institute award BPS-2022C3-27663, which is pending completion of a business and programmatic review by institute staff as well as issuance of a formal award contract.