Determining Outcomes of Phalloplasty and Metoidioplasty: A Community-Directed Way Forward скачать в хорошем качестве

Determining Outcomes of Phalloplasty and Metoidioplasty: A Community-Directed Way Forward

Leo Rutherford, University of Victoria, Canada Aeron Stark Noah Adams, University of Toronto, Ontario Institute for Studies in Education, Canada Logan Berrian Gaines Blasdel, New York University Grossman School of Medicine, USA Linden Jennings Keenan Pinder Lucas Wilson Surgeons have typically determined outcomes of metoidioplasty and phalloplasty based on data they collect from their patients as part of follow-up after surgery. The tools used to collect data vary and rarely are data from one surgical center compared to others. Although changes are occurring, surgeons have not included the voices of patients or those interested in surgery when developing tools to measure outcomes. Only a few current studies are including those with lived experience in their process of designing outcome measures and conducting research. Outcomes of these surgeries matter the most to those who undergo them or will in the future, therefore it is these people who should drive the research on this topic. In this presentation, I will introduce a new research project called Patient-Reported Outcomes of Genital Reconstruction and Experiences of Surgical Satisfaction (PROGRESS) for metoidioplasty and phalloplasty. PROGRESS is currently in development; our process includes 8 individuals with lived experience of metoidioplasty or phalloplasty coming together to create a novel survey focused on outcomes we believe are important to community members. Using a community-based and patient-oriented approach, we are currently developing a tool to measure various aspects of health and well-being that may be impacted by undergoing surgery. Data analysis and interpretation will produce results that highlight aspects of preparing for, undergoing and recovery from surgery that impact well-being. Our knowledge translation will focus first and foremost on resources for other community members interested in these surgeries and their outcomes. It is our hope that future research on transition-related surgeries utilizes similar methods to ensure research is meaningful and appropriate for our communities.