Year: 2024
Type: letter
Abstract: The recent publication from Tonorezos et al. (1), “Prevalence of cancer survivors in the United States,” reports that the prevalence of long-term and very long-term cancer survivors is increasing and that this population is heterogeneous, with a variety of complex and diverse health-care needs. Such needs are associated with late physical and psychosocial treatment effects, often compounded by concerns associated with aging. To optimize acute and long-term survivorship care, the oncology community must focus efforts on understanding the person as whole, and paramount to this approach is understanding social determinants of health—that is, “conditions in the environments where people are born, live, learn, work, play, worship, and age that affect a wide range of health, functioning, and quality-of-life outcomes and risks” (2). The Surveillance, Epidemiology, and End Results (SEER) Program (3) was designed to “provide information on cancer statistics in an effort to reduce the cancer burden among the U.S. population.” Although SEER collects data on age, race, sex, year of diagnosis, and geography, information about sexual orientation or gender identity is not collected. The “sex” collected in the SEER registry most likely reflects a person’s sex assigned as birth. Why are sexual orientation (eg, straight, gay, lesbian, pansexual) and gender identity (eg, cisgender, transgender, 2-spirit, gender diverse) important elements of cancer care? Sexual orientation and gender identity are parts of social determinants of health and important pieces of demographic information at the individual level for providing holistic, personalized, and comprehensive care for sexual or gender minority individuals (4). Collecting sexual orientation and gender identity data is also relevant to understanding the cancer burden in these minority populations. The little data known have shown significant cancer health disparities experienced in sexual or gender minority communities, ranging from lack of preventive care to worse physical and psychosocial outcomes to increased mortality. These statistics will likely only worsen and remain largely unknown if the oncology community does not create space to collect sexual orientation and gender identity data and improve research efforts to identify gaps in prevention and survivorship care. When SEER registry data lacks the inclusion of sexual orientation and gender identity of patients with cancer (5), we have limited data on the incidence and mortality. Therefore, we are hindered in creating meaningful guidelines for prevention and clinical care, especially for individuals at the intersection of multiple marginalized identities (eg, transgender woman of color). Although collecting relevant sexual orientation and gender identity data is important at the individual and societal levels, such data are only 1 aspect in closing this health-care gap. We must also train the oncology workforce to reliably, accurately, and humbly collect these data and to be prepared to provide tailored, culturally relevant care to sexual or gender minority cancer survivors and their caregivers. We provided a copy of this Correspondence to the authors of the article that prompted this work and offered them the opportunity to respond. They declined to write a response. No new data were generated or analyzed for this correspondence. Jason Domogauer, MD, PhD (Writing—original draft; Writing—review & editing); Marina Stasenko, MD (Writing—original draft; Writing—review & editing); Gwendolyn P. Quinn, PhD (Conceptualization; Writing—original draft; Writing—review & editing); Matthew B. Schabath, PhD (Software; Writing—original draft; Writing—review & editing). No funding is associated with this manuscript. All authors report no disclosures.
DOI: 10.1093/jnci/djae205
Language: English
Topic: Cancer survivorship and care
Subfield: Oncology
Field: Medicine
Domain: Health Sciences
Open Access status: bronze
OpenAlex ID: W4401843037