Halbert Chanita Hughes, Brewster Kiyona, Collier Aliya, Smith Chachira, Kessler Lisa, Weathers Benita, Stopfer Jill E, Domchek Susan, Wileyto E Paul
Abramson Cancer Center, Department of Psychiatry, University of Pennsylvania, Philadelphia, 19104, USA.
J Clin Oncol. 2005 Nov 1;23(31):7967-73. doi: 10.1200/JCO.2004.00.4952.
This study evaluated the process of recruiting African American women to participate in genetic counseling research for BRCA1 and BRCA2 (BRCA1/2) mutations with respect to referral, study enrollment, and participation in genetic counseling.
African American women (n = 783) were referred for study enrollment.
Of 783 referrals, 164 (21%) women were eligible for enrollment. Eligible women were most likely to be referred from oncology clinics (44%) and were least likely to be referred from general medical practices (11%; chi(2) = 96.80; P = .0001). Overall, 62% of eligible women enrolled onto the study and 50% of enrollees completed genetic counseling. Women with a stronger family history of cancer (odds ratio [OR] = 3.18; 95% CI, 1.36 to 7.44; P = .01) and those referred from oncology clinics and community oncology resources (OR = 2.97; 95% CI, 1.34 to 6.58; P = .01) were most likely to enroll onto the study. Referral from oncology clinics was associated significantly with participation in genetic counseling (OR = 5.46; 95% CI, 1.44 to 20.60; P = .01).
Despite receiving a large number of referrals, only a small subset of women were eligible for enrollment. Oncology settings were the most effective at identifying eligible African American women and general medical practices were the least effective. Factors associated with enrollment included having a stronger family history of cancer and being referred from oncology clinics and community oncology resources. Referral from oncology clinics was the only factor associated significantly with participation in genetic counseling. Education about hereditary breast cancer may be needed among primary care providers to enhance appropriate referral of African American women to genetic counseling for BRCA1/2 mutations.
本研究评估了招募非裔美国女性参与BRCA1和BRCA2（BRCA1/2）基因突变遗传咨询研究的过程，涉及转诊、研究入组以及遗传咨询参与情况。
783名非裔美国女性被转诊以纳入研究。
在783次转诊中，164名（21%）女性符合入组条件。符合条件的女性最有可能来自肿瘤诊所转诊（44%），最不可能来自普通医疗诊所转诊（11%；χ² = 96.80；P = 0.0001）。总体而言，62%符合条件的女性入组了该研究，50%的入组者完成了遗传咨询。有更强癌症家族史的女性（优势比[OR] = 3.18；95%可信区间，1.36至7.44；P = 0.01）以及从肿瘤诊所和社区肿瘤资源转诊而来的女性（OR = 2.97；95%可信区间，1.34至6.58；P = 0.01）最有可能入组该研究。肿瘤诊所的转诊与遗传咨询参与显著相关（OR = 5.46；95%可信区间，1.44至20.60；P = 0.01）。
尽管收到大量转诊，但只有一小部分女性符合入组条件。肿瘤环境在识别符合条件的非裔美国女性方面最有效，而普通医疗诊所最无效。与入组相关的因素包括有更强的癌症家族史以及从肿瘤诊所和社区肿瘤资源转诊而来。肿瘤诊所的转诊是与遗传咨询参与显著相关的唯一因素。初级保健提供者可能需要接受关于遗传性乳腺癌的教育，以加强对非裔美国女性进行BRCA1/2基因突变遗传咨询的适当转诊。
