Division of Hematology and Medical Oncology, Department of Medicine, Wilmot Cancer Institute, University of Rochester Medical Center, Rochester, NY.
CancerLinQ LLC, American Society of Clinical Oncology, Alexandria, VA.
JCO Oncol Pract. 2021 Mar;17(3):e336-e342. doi: 10.1200/OP.20.00634.
Cancer prevalence and outcomes data, necessary to understand disparities in transgender populations, are significantly hampered because gender identity data are not routinely collected. A database of clinical data on people with cancer, CancerLinQ, is operated by the ASCO and collected from practices across the United States and multiple electronic health records.
To attempt to identify transgender people with cancer within CancerLinQ, we used three criteria: (1) International Classification of Diseases 9/10 diagnosis (Dx) code suggestive of transgender identity; (2) male gender and Dx of cervical, endometrial, ovarian, fallopian tube, or other related cancer; and (3) female gender and Dx of prostate, testicular, penile, or other related cancer. Charts were abstracted to confirm transgender identity.
Five hundred fifty-seven cases matched inclusion criteria and two hundred and forty-two were abstracted. Seventy-six percent of patients with Dx codes suggestive of transgender identity were transgender. Only 2% and 3% of the people identified by criteria 2 and 3 had evidence of transgender identity, respectively. Extrapolating to nonabstracted data, we would expect to identify an additional four individuals in category 2 and an additional three individuals in category 3, or a total of 44. The total population in CancerLinQ is approximately 1,300,000. Thus, our methods could identify 0.003% of the total population as transgender.
Given the need for data regarding transgender people with cancer and the deficiencies of current data resources, a national concerted effort is needed to prospectively collect gender identity data. These efforts will require systemic efforts to create safe healthcare environments for transgender people.
了解跨性别群体之间差异所需的癌症患病率和结果数据，由于性别认同数据未被常规收集，因此受到严重阻碍。癌症 LinQ 是由 ASCO 运营的一个癌症患者临床数据数据库，从美国各地的实践和多个电子健康记录中收集。
为了尝试在癌症 LinQ 中识别患有癌症的跨性别者，我们使用了三个标准：（1）国际疾病分类第 9/10 版诊断（Dx）代码提示跨性别身份；（2）男性性别和诊断为宫颈癌、子宫内膜癌、卵巢癌、输卵管癌或其他相关癌症；（3）女性性别和诊断为前列腺癌、睾丸癌、阴茎癌或其他相关癌症。提取图表以确认跨性别身份。
符合纳入标准的有 557 例病例，其中 242 例被提取。有 Dx 代码提示跨性别身份的患者中，有 76%是跨性别者。仅通过标准 2 和 3 识别的患者中，分别有 2%和 3%有跨性别身份的证据。推断到未提取的数据，我们预计在类别 2 中再识别出 4 个人，在类别 3 中再识别出 3 个人，总共 44 人。癌症 LinQ 的总人群约为 130 万人。因此，我们的方法可以识别出总人口的 0.003%为跨性别者。
鉴于需要了解患有癌症的跨性别者的数据，以及当前数据资源的不足，需要全国范围内齐心协力，前瞻性地收集性别认同数据。这些努力将需要系统地努力为跨性别者创造安全的医疗环境。
