Validation of family history data in cancer family registries
Validation of family history data in cancer family registries
复制标题
DOI：
10.1016/s0749-3797(02)00593-7
复制
发表时间：
2003-02-01
影响因子：
5.5
通讯作者：
Anton-Culver, H
中科院分区：
文献类型：
--
作者：
Ziogas, A;Anton-Culver, H
背景：虽然在基于人群、病例对照、队列或基于家庭的研究中，癌症家族史信息被用来推断疾病的风险，但关于先证者报告的准确性的信息很少。在这项研究中，我们试图确定先证者在以人群为基础和以临床为基础的乳腺癌、卵巢癌和结直肠癌家庭登记处报告癌症家族史的有效性。方法：为了评估先证者在其亲属中报告的癌症家族史的准确性，我们将每个先证者的个人访谈的家族史与包括病理报告、自我报告或亲属死亡证明在内的参考标准进行比较。我们的研究包括1111个家庭，共有3222名亲属得到验证。为了解释家庭内部的相关性，我们使用了广义估计方程方法。结果：亲属中先证者报告的癌症状况与参考标准之间的一致概率因癌症部位和与先证者的关系程度而异。女性乳腺癌一级亲属的概率为95.4%(95%可信区间[CI]=92.6-98.3)；卵巢癌占83.3% (95% CI=72.8 ~ 93.8)；结直肠癌占89.7% (95% CI=85.4-94.0)；前列腺癌为79.3% （95% CI=70.0-88.6）。结论：我们发现先证者在报告一级亲属时报告大多数癌症部位的可靠性很高，而在报告二级和三级亲属时可靠性中等。癌症的高报率很少见（2.4%）。先证者的种族或民族和性别不影响报告的准确性。然而，与先证者的关系程度、癌症类型、先证者诊断时的年龄和确定先证者的来源是报告准确性的统计显著预测因素。
Background: Although family history information on cancer is used to infer risk of the disease in population-based, case-control, cohort, or family-based Studies, little information is available on the accuracy of a proband's report. In this study, we sought to determine the validity of the reporting of family history of cancer by probands in population-based and clinic-based family registries of breast, ovarian, and colorectal cancers.Methods: To assess the accuracy of probands' reported family history of cancer in their relatives, we compared the family history from the personal inter-view of each proband to a reference standard that included pathology reports, self-reports, or death certificates on the relatives. Our study included 1111 families that accounted for 3222 relatives who were verified. To account for within-family correlations in the responses, we used a generalized estimating equation approach.Results: The probability of agreement between the proband-reported cancer status in a relative with the reference standard varied by cancer site and by degree of relationship to the proband. This probability for first-degree relatives was 95.4% (95% confidence interval [CI]=92.6-98.3) for female breast cancer; 83.3% (95% CI=72.8-93.8) for ovarian cancer; 89.7% (95% CI=85.4-94.0) for colorectal cancer; and 79.3% (95% CI=70.0-88.6) for prostate cancer.Conclusions: We found high reliability of probands' reporting on most cancer sites when they reported on first-degree relatives and moderate reliability for their reporting on second- and third-degree relatives. Overreporting of cancer was rare (2.4%). Race or ethnicity and gender of the proband did not influence the accuracy of reporting. However, degree of relationship to the proband, type of cancer, age at diagnosis of the proband, and source of ascertainment of probands were statistically significant predictors of accuracy of reporting.