ASO Author Reflections: Constructing a Transgender and Nonbinary Cohort to Analyze Breast Cancer Screening
Mona Ascha, Dylan Felt, Lauren B. Beach, Swati A. Kulkarni & Sumanas W. Jordan
Transgender and nonbinary (TGNB) individuals experience broad-ranging cancer disparities, from detection to treatment to survivorship. Preliminary reports of breast cancer screening among TGNB patients demonstrate lower rates than among cisgender patients. Low breast cancer screening rates among TGNB patients are affected by healthcare avoidance and social stigma.
The first challenge to examining breast cancer screening rates among TGNB patients at our center was building the cohort of TGNB patients from our electronic medical record (EMR). We used International Classification of Disease (ICD) diagnosis codes of gender dysphoria, structured sexual orientation and gender identity (SOGI) data, and natural language processing to construct the cohort. This labor-intensive process highlighted the need for robust and accurate documentation of SOGI data in the EMR.
We identified 253 TGNB patients over the age of 40 years: 193 transgender women and nonbinary people designated male at birth (TGNB DMAB) and 60 transgender men and nonbinary people designated female at birth (TGNB DFAB). TGNB DMAB screening rates ranged from 7.1 to 47.6%, while TGNB DFAB screening ranged from 2.0 to 50.0%, depending on the guidelines used. These were lower than institutional (77.3%) and nationally reported breast cancer screening rates (66.7–78.4%) for cisgender women. Average mammogram-person years for TGNB DMAB and TGNB DFAB were 0.171 and 0.134, respectively, compared with the recommended rate of 0.5.
Guidelines for breast cancer screening among TGNB patients should be updated, including the development of consensus guidelines for screening following gender-affirming mastectomy. A unique barrier to healthcare access for TGNB patients is the gendering of anatomy. Terms such as “breasts” may be discomforting for some patients. We provide two recommendations: (1) Providers should mirror the language their patients use to provide culturally competent care, and (2) providers, researchers, patients, and society should strive to uncouple organs from gender, to reduce patient distress and promote preventative healthcare. Finally, we underscore the need for SOGI data documentation at the institutional and national level. EMR and public health surveillance systems should collect SOGI data to facilitate research to improve the health of TGNB populations.