ACCURACY OF FAMILY HISTORY OF CANCER OBTAINED THROUGH INTERVIEWS WITH RELATIVES OF PATIENTS WITH CHILDHOOD SARCOMA
ACCURACY OF FAMILY HISTORY OF CANCER OBTAINED THROUGH INTERVIEWS WITH RELATIVES OF PATIENTS WITH CHILDHOOD SARCOMA
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DOI：
10.1016/0895-4356(94)90037-x
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发表时间：
1994-01-01
影响因子：
7.2
通讯作者：
STRONG, LC
中科院分区：
文献类型：
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作者：
BONDY, ML;STROM, SS;STRONG, LC
这项研究的目的是为了确定亲属报告家庭研究中浸润性癌症的准确性。首先，我们试图评估在患有软组织肉瘤的儿童的二级亲属中发现的低于预期的癌症发病率是否是漏报的结果。其次，我们通过将报告的癌症信息与医疗记录和死亡证明的文件进行比较，评估了两个数据集中报告的癌症的准确性。我们从一位主要的信息者(通常是先证者的父母)那里获得了68名儿童和青少年软组织肉瘤患者的346名一级亲属和784名二级亲属的病历。为了调查主要告密者的漏报情况，我们对每个成年亲属或代理人进行了单独的面谈。初级告密者报告了一级亲属中的22例癌症，均被确认为浸润性癌症，二级亲属中的71例癌症，其中67例中有50例的文件证实为浸润性癌症。在联系的715名个人告密者中，报告了另外15种癌症，其中5种被证实为浸润性癌症。一级亲属确诊为浸润性癌症的人数在预期范围内，而二级亲属的癌症人数低于预期范围(观察/预期=0.51(54/105.5)95%可信区间=0.39~0.67)。因此，二级亲属的癌症人数低于预期并不是由于单一举报人报告不足或无法获得文件所致。在二级亲属中多报了25例癌症(24.5%)，这表明需要记录所有报告的癌症。在对382个儿童和青少年骨肉瘤家庭的第二项研究中，我们发现，一个线人向他/她的一级亲属报告癌症的准确率为88%(86/98)。结果表明，一个告密者可能足以提供关于一级亲属的信息，但关于二级亲属的准确报告需要额外的受访者和文件。
The purpose of this study was to determine the accuracy of reporting of invasive cancer by relatives for family studies. First, we attempted to evaluate whether a lower than expected cancer rate found in second-degree relatives of children with soft-tissue sarcoma was a result of underreporting. Second, we evaluated the accuracy of reported cancer in two data sets by comparing reported cancer information with documentation by medical records and death certificates. We obtained medical histories from a primary informant, usually the proband's parent, on 346 first- and 784 second-degree relatives of 68 childhood and adolescent soft-tissue sarcoma patients. To investigate underreporting by the primary informant we conducted an individual interview with each adult relative or proxy. Primary informants reported 22 cancers in first-degree relatives, all confirmed as invasive cancer, and 71 cancers in second-degree relatives with 50 of 67 for which documentation confirmed as invasive. Of 715 individual informants contacted, 15 additional cancers were reported, including 5 confirmed as invasive. The number of first-degree relatives with confirmed invasive cancers was within the expected range; however, the number of cancers in second-degree relatives was below the expected range (observed/expected = 0.51 (54/105.5) 95% confidence interval (CI) = 0.39-0.67). Thus, the lower than expected number of cancers in second-degree relatives was not attributable to underreporting by a single informant or inability to obtain documentation. The overreporting of 25 cancers (24.5%) in second-degree relatives, indicates the need to document all reported cancers. In a second study of 382 childhood and adolescent bone sarcoma families we found that reports of cancer by one informant for his/her first-degree relatives were 88% (86/98) accurate. The results suggest that one informant may suffice for information on first-degree relatives, but that accurate reports on second-degree relatives require additional respondents and documentation.