Recruitment of a Population-Based Sample of Young Black Women with Breast Cancer through a State Cancer Registry.
Recruitment of a Population-Based Sample of Young Black Women with Breast Cancer through a State Cancer Registry.
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DOI：
10.1111/tbj.12545
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发表时间：
2016-03
期刊：
影响因子：
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通讯作者：
Pal T
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文献类型：
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作者：
Bonner D;Cragun D;Reynolds M;Vadaparampil ST;Pal T
鉴于黑人女性在临床研究中的代表性仍然不足，我们试图通过州癌症登记处招募患有乳腺癌的年轻黑人女性的人口样本。 2009 年至 2012 年佛罗里达州所有被诊断患有浸润性乳腺癌的 50 岁或以下黑人女性的人口统计和临床信息是通过州癌症登记处获得的。通过国家规定的招募方式邀请幸存者参与这项研究。使用分类变量的卡方检验和连续变量的两个样本 t 检验来比较参与者的人口统计和临床特征，以确定以下之间的差异：1）同意的参与者与所有其他合格的参与者； 2）生者与死者。在 1647 名患有乳腺癌的年轻黑人女性中，诊断时的平均年龄为 42.5 岁，其中大多数患有局部或区域疾病、未婚、有私人保险和就业。 456 名同意的研究参与者与其余 1191 名假定符合条件的个体之间的人口统计和临床变量没有显着差异。与潜在参与者相比，在招募前确定死亡的女性 (n=182) 明显更有可能患有远处疾病和三阴性表型。他们失业、没有保险或拥有公共保险（即医疗补助或医疗保险）的可能性也明显更高。我们的结果表明，通过州癌症登记处招募基于人群的乳腺癌幸存者样本对于这个服务不足和代表性不足的人群来说是一种可行的策略。然而，由于诊断和招募之间的滞后时间而观察到的生存偏差在将研究结果推广到所有年轻黑人乳腺癌患者时非常重要。
Given that Black women remain underrepresented in clinical research studies, we sought to recruit a population-based sample of young Black women with breast cancer through a state cancer registry. Demographic and clinical information on all Black women diagnosed with invasive breast cancer at or below age 50 between 2009–2012 in Florida was obtained through the state cancer registry. Survivors were invited to participate in the study through state-mandated recruitment methods. Participant demographic and clinical characteristics were compared using Chi-square tests for categorical variables and the two sample t-test for continuous variables to identify differences between: 1) consented participants versus all other eligible; and 2) living versus deceased. Of the 1647 young Black women with breast cancer, mean age at diagnosis was 42.5, with the majority having localized or regional disease, unmarried, privately insured, and employed. There were no significant differences in demographic and clinical variables between the 456 consented study participants versus the remaining 1191 presumed eligible individuals. Compared to potential participants, women determined to be deceased prior to recruitment (n=182) were significantly more likely to have distant disease and a triple negative phenotype. They were also significantly more likely to be unemployed, and uninsured or have public insurance (i.e., Medicaid or Medicare). Our results demonstrate that recruitment of a population-based sample of breast cancer survivors through a state cancer registry is a feasible strategy in this underserved and underrepresented population. However, survival bias, which was observed due to the lag time between diagnosis and recruitment, is important to adjust for when generalizing findings to all young Black breast cancer patients.