Steven Stellman - Performance of Self-Report to Establish Cancer Diagnoses in Disaster Responders and Survivors, World Trade Center Health Registry, New York, 2001-2007

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      Li, J., Cone, J. E., Alt, A. K., Wu, D. R., Liff, J. M., Farfel,   M. R., Stellman, S. D. 131 (3) 420-9-

      Abstract: OBJECTIVE: 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). METHODS: 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. RESULTS: 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. CONCLUSION:   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.

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