Abstract Objectives: This review builds on the knowledge of the unique barriers that transgender and gender expansive (TGE) people experience to health management that manifest in significantly lower breast/chest cancer (BC) screening utilization rates as compared to non-TGE people. The purpose is to identify gaps that exist in the scientific literature on the risk-related experiences, including screening and preventive decision-making processes and coping thoughts and behaviors among TGE people who are at elevated risk for BC. Methods: We conducted a systematic review of the literature by searching for articles that reviewed or reported original research, discussed TGE people with elevated (hereditary) BC risk who had not been diagnosed with BC at the time of the study, and discussed the outcomes of risk perceptions, risk management, screening, preventive decision-making, coping thoughts and behaviors, or other experiences regarding that elevated BC risk. We searched 7 databases for research articles published in English through December 2022. We conducted a meta-synthesis to compose an integrated account of the themes elucidated across the included articles. Results: Our searches yielded 2473 unique articles, all of which were screened for this review. In total, 9 qualitative observational studies and 1 informal literature review were eligible for inclusion. These studies had methodological weaknesses. The majority did not disclose demographic information about participants, such as age, race/ethnicity, socioeconomic status, or sexual orientation. None discussed intersex people; and few discussed non-binary identities. Most articles failed to address risk perceptions, risk-related experiences, coping thoughts and behaviors, or patient perspectives. Nearly all the studies focused on how high-risk TGE individuals should be clinically managed, emphasizing the lack of TGE-specific BC screening guidelines. Their coverage generally presents high-risk TGE people as clinical anomalies to be managed rather than individuals with agency. Notably, though, two articles written by a team affiliated with a gender clinic that included gender affirming specialists prioritized the discussion of patients’ perspectives by directly quoting the patients. These articles also centered the concept of patient autonomy and emphasized the importance of shared decision making, given that evidence-based guidelines for screening and risk management among this population do not exist. Conclusions: The current scientific literature on BC risk management and decision-making needs among high-risk TGE individuals is severely limited. Foundational sample-based research is needed to explore the risk-related experiences of TGE people with elevated BC risk. This research should overtly attend to gender identity and its relation to prevention-related experiences. Focusing on the patient perspective in future research would help situate TGE people as active participants in their health management by facilitating a better understanding of their needs and experiences as patients. Citation Format: Kaleb Masterson, Eoghan Q. Victory, Jacob Slater, Electra D. Paskett, Tasleem J. Padamsee. Risk-related experiences among transgender and gender expansive people with elevated breast/chest cancer risk: A systematic review abstract. In: Proceedings of the 18th AACR Conference on the Science of Cancer Health Disparities; 2025 Sep 18-21; Baltimore, MD. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2025;34(9 Suppl):Abstract nr A159.
Masterson et al. (Thu,) studied this question.
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