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Design and Participants: This study updated reported rates of collection of SOGI data across the National Cancer Institute Community Oncology Research Program (NCORP) network in 2022 and characterized practice group (PG)–level and population-level factors associated with these rates. PGs were asked about routine collection of SOGI data in the electronic health record. The proportions of PGs reporting collection of SO/GI data were calculated, and PG characteristics were assessed for associations. Descriptive statistics and multivariate logistic regression were used.
Results: Of 271 PGs, 42% collected SO data, 58% GI, 35% both, and 36% neither. SO data collection was associated with PGs having minority outreach staff (odds ratio [OR]=2.1 [95% CI=1.1-3.8]). Northeast practices were likelier to collect GI information (2.1 [0.73-5.9]) vs Midwest, whereas Southern practices (0.59 [0.30-1.2]) were least likely to collect this information vs Midwest. Practices with higher percentages of new patients identifying as White were likelier to collect GI information (1.0 [1.0-1.1]). Northeast practices were likelier to collect both SO and GI information (2.7 [1.1-6.6]), vs Midwest practices, whereas Southern practices (0.49 [0.26-0.94]) were least likely to collect this information vs Midwest. There were no differences in SO/GI collection on the basis of the PGs’ proportion of Medicaid/Medicare patients, number of new patients with cancer per year, or practice ownership.
Commentary: Approximately 3% to 12% of the adult US population identifies as LGBTQ, spanning all races, ethnicities, ages, socioeconomic statuses, and regions of the United States.1 Sexual and gender minorities have disproportionately higher rates of late diagnosis and worse cancer outcomes.1-4 Without SOGI data collected in a nationwide research infrastructures such as the NCORP, we cannot fully understand how and to what degree cancer diagnoses and outcomes are distributed unequally among these marginalized populations.2-4 Further, it will be difficult to identify disparities in access to and quality of palliative care for these populations. Those with intersecting minoritized identities, including racial and ethnic minorities, older adults, and socioeconomically disadvantaged, might be even more vulnerable to omission of SOGI data collection regarding needs for care seeking, communication, and outcomes.
Bottom Line: SOGI data collection is critical to understand barriers to and unmet needs of cancer treatments and psychosocial support among sexual and gender minorities.
Reviewer: Shaowei Wan, PhD, University of Colorado Anschutz School of Medicine, Aurora, CO
References:
1. Quinn GP, Sanchez JA, Sutton SK, et al. Cancer and lesbian, gay, bisexual, transgender/transsexual, and queer/questioning (LGBTQ) populations. CA Cancer J Clin. 2015;65:384-400.
2. Jackson SS, Han X, Mao Z, et al. Cancer stage, treatment, and survival among transgender patients in the United States. J Natl Cancer Inst. 2021;113:1221-1227.
3. Burns ZT, Bitterman DS, Perni S, et al. Clinical characteristics, experiences, and outcomes of transgender patients with cancer. JAMA Oncol. 2021;7:e205671.
4. Brown GR, Jones KT. Incidence of breast cancer in a cohort of 5,135 transgender veterans. Breast Cancer Res Treat. 2015;149:191-198.
Source: Cathcart-Rake EJ, Jatoi A, Dressler EV, et al. Sexual orientation and gender identity data collection in cancer care: a nationwide landscape assessment update. JCO Oncol Pract. 2024;20(9):1272-1279. doi:10.1200/OP.23.00724.
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