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1 Transgender Male Patients and Hereditary Transgender male patients and hereditary breast cancer risk: broaching difficult topics to reduce healthcare disparities Thesis Presented in Partial Fulfillment of the Requirements for the Degree Master of Science in the Graduate School of The Ohio State University By Julia Anne Coltri Graduate Program in Genetic Counseling The Ohio State University 2019 Thesis Committee Robert Pilarski, MS, MSW, LGC, Advisor Leigha Senter MS, LGC Kandamurugu Manickam, MD Melissa Davis, MD 1 Copyrighted by Julia Anne Coltri 2019 2 Abstract Transgender individuals face significant healthcare disparities due to discrimination, which include reluctance to disclose, lack of provider experience and resources, structural barriers, and financial barriers. No consensus guidelines have been developed for breast cancer risk assessment and screening in transgender male patients. Breast health can be a difficult topic for transgender men, as it brings them into female centered spaces and can lead to experiences of gender dysphoria. This research aims to elucidate barriers to breast cancer screening and genetic risk evaluation for transmasculine individuals. Research questions aimed to determine the level of awareness transgender men have about breast cancer risk and screening, and the factors that lead to positive or distressing conversations about breast health with these patients. We aim to determine how healthcare providers can foster a safe and affirming environment that increases comfort and reduces perceptions of discrimination and gender related dysphoria with a focus on genetic counseling for hereditary breast cancer risk assessment. Recommendations are made for improving the clinical experiences of these individuals including mirroring an individual’s terminology for their anatomy, providing gender affirming patient resources, addressing the gendered cultural discussion around breast cancer, using correct name and pronouns, and acknowledging the topic as potentially difficult. ii Dedication This document is dedicated to my family and friends who have inspired and supported me throughout this process. iii Acknowledgments I want to thank my committee members for their dedication to this project. Thank you to the community members who provided guidance during the development of survey materials and aided in the recruitment of participants. Thank you to The Ohio State University genetic counseling graduate program for providing the opportunity for me to pursue this project. Thank you to the faculty, staff, and students of the graduate program for their unending support. Thank you to the National Society of Genetic Counselors Special Interest Group for funding this project. iv Vita June 2009……………………………………… The Park School of Baltimore May 2011……………………………………… Lake Forest College May 2013……………………………………… B.A. Biology, Brandeis University May 2019……………………………………… M.S. Genetic Counseling, The Ohio State University, in progress Fields of Study Major Field: Genetic Counseling v Table of Contents Abstract ............................................................................................................................... ii Dedication .......................................................................................................................... iii Acknowledgments .............................................................................................................. iv Vita ...................................................................................................................................... v List of Tables ................................................................................................................... viii List of Figures .................................................................................................................... ix Chapter 1. Introduction ....................................................................................................... 1 Healthcare Disparities and Discrimination ..................................................................... 3 Transition ........................................................................................................................ 7 Breast Cancer Risk in Transgender Men ........................................................................ 9 Suggested Breast Cancer Screening .............................................................................. 15 Genetic Counseling for Hereditary Breast Cancer ........................................................ 20 Recommendations for Culturally Humble Transgender Healthcare ............................. 25 Psychosocial Issues in Breast Health ............................................................................ 27 Overview ....................................................................................................................... 29 Chapter 2. Materials and Methods .................................................................................... 30 Participants .................................................................................................................... 30 Procedures ..................................................................................................................... 31 Measures/Material ......................................................................................................... 31 Analysis......................................................................................................................... 33 Chapter 3. Results ............................................................................................................. 35 Demographics of Participants ....................................................................................... 35 Transition ...................................................................................................................... 36 Interactions with the Healthcare ................................................................................... 38 Cancer Experiences of Participants .............................................................................. 42 vi Breast Cancer Screening ............................................................................................... 44 Breast Cancer Risk Perception ...................................................................................... 50 Measures of Distress ..................................................................................................... 51 Experiences of Discrimination ...................................................................................... 54 Recommendations from Participants ............................................................................ 61 Chapter 4. Discussion ....................................................................................................... 63 Aim 1. Barriers to Breast Cancer Risk Assessment in Transgender Men .................... 63 Aim 2. Awareness of Breast Cancer Risks and Screenings .......................................... 67 Aim 3. Factors Leading to Positive or Distressing Healthcare Interactions about Breast Health ............................................................................................................................ 71 Aim 4. Creating a Safe and Affirming Clinical Environment ...................................... 73 Secondary Findings ....................................................................................................... 77 Limitations .................................................................................................................... 80 Conclusions and Recommendations for Providers ....................................................... 81 References ......................................................................................................................... 84 Appendix A. Informed Consent ...................................................................................... 102 Appendix B. Survey Tool ............................................................................................... 104 Appendix C. Recruitment Materials ............................................................................... 110 Appendix D. Free Responses .......................................................................................... 111 vii List of Tables Table 1. NCCN recommendations for Cisgender Female BRCA1/2 Pathogenic and Likely Pathogenic Variant Carriers .................................................................................. 16 Table 2. NCCN recommendations for Cisgender Male BRCA1/2 Pathogenic and Likely Pathogenic Variant Carriers .............................................................................................. 17 Table 3. NCCN recommendations for BRCA1/2 Pathogenic and Likely Pathogenic Variant Carriers of All Genders ........................................................................................ 17 Table 4. NCCN recommendations for what patients should receive genetic risk evaluation .......................................................................................................................... 22 Table 5. Groups in which a link to the survey was distributed. ....................................... 30 Table 6. Demographics of participants. ............................................................................ 35 Table 7. Personal history of cancer and genetic counseling for participants. .................. 43 viii List of Figures Figure 1. Transition actions
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