Li Jiehui, Cone James E, Alt Abigail K, Wu David R, Liff Jonathan M, Farfel Mark R, Stellman Steven D
New York City Department of Health and Mental Hygiene, World Trade Center Health Registry, Long Island City, NY.
Swedish Medical Center, Seattle, WA.
Public Health Rep. 2016 May-Jun;131(3):420-9. doi: 10.1177/003335491613100308.
Large-scale disasters may disrupt health surveillance systems, depriving health officials and researchers of timely and accurate information needed to assess disaster-related health effects and leading to use of less reliable self-reports of health outcomes. In particular, ascertainment of cancer in a population is ordinarily obtained through linkage of self-reported data with regional cancer registries, but exclusive reliance on these sources following a disaster may result in lengthy delays or loss of critical data. To assess the impact of such reliance, we validated self-reported cancer in a cohort of 59,340 responders and survivors of the World Trade Center disaster against data from 11 state cancer registries (SCRs).
We focused on residents of the 11 states with SCRs and on cancers diagnosed from September 11, 2001, to the date of their last survey participation. Medical records were also sought in a subset of 595 self-reported cancer patients who were not recorded in an SCR.
Overall sensitivity and specificity of self-reported cancer were 83.9% (95% confidence interval [CI] 81.9, 85.9) and 98.5% (95% CI 98.4, 98.6), respectively. Site-specific sensitivities were highest for pancreatic (90.9%) and testicular (82.4%) cancers and multiple myeloma (84.6%). Compared with enrollees with true-positive reports, enrollees with false-negative reports were more likely to be non-Hispanic black (adjusted odds ratio [aOR] = 1.8, 95% CI 1.2, 2.9) or Asian (aOR=2.2, 95% CI 1.2, 4.1). Among the 595 cases not recorded in an SCR, 13 of 62 (21%) cases confirmed through medical records were reportable to SCRs.
Self-report of cancer had relatively high sensitivity among adults exposed to the World Trade Center disaster, suggesting that self-reports of other disaster-related conditions less amenable to external validation may also be reasonably valid.
大规模灾难可能扰乱健康监测系统，使卫生官员和研究人员无法获得评估灾难相关健康影响所需的及时、准确信息，从而导致使用可靠性较低的健康结果自我报告。特别是，通常通过将自我报告数据与区域癌症登记处相链接来确定人群中的癌症情况，但灾难后仅依赖这些来源可能会导致严重延误或关键数据丢失。为评估这种依赖的影响，我们对照11个州癌症登记处（SCR）的数据，验证了世贸中心灾难的59340名响应者和幸存者队列中自我报告的癌症情况。
我们关注有SCR的11个州的居民，以及2001年9月11日至他们最后一次参与调查之日诊断出的癌症。还在595名未记录在SCR中的自我报告癌症患者子集中查找医疗记录。
自我报告癌症的总体敏感性和特异性分别为83.9%（95%置信区间[CI]81.9，85.9）和98.5%（95%CI98.4，98.6）。特定部位的敏感性在胰腺癌（90.9%）、睾丸癌（82.4%）和多发性骨髓瘤（84.6%）中最高。与报告为真阳性的参与者相比，报告为假阴性的参与者更可能是非西班牙裔黑人（调整优势比[aOR]=1.8，95%CI1.2，2.9）或亚洲人（aOR=2.2，95%CI1.2，4.1）。在未记录在SCR中的595例病例中，通过医疗记录确认的62例病例中有13例（21%）应报告给SCR。
在世贸中心灾难的成年幸存者中，癌症自我报告具有较高的敏感性，这表明对于其他较难通过外部验证的灾难相关情况，自我报告也可能具有合理的有效性。
