Validating cancer histories in deceased relatives

Area of Science:

• Epidemiology
• Genetics
• Cancer Research

Background:

• Family history of cancer is a significant risk factor, influenced by shared genetics and environment.
• Reporting of family cancer history is prone to inaccuracies and bias.
• Accurate family cancer history is crucial for risk assessment and epidemiological studies.

Purpose of the Study:

• To assess the accuracy of reported family cancer history in deceased first-degree relatives.
• To compare the effectiveness of death certificates and the National Death Index (NDI) in verifying cancer reports.
• To evaluate the reliability of family cancer history data in case-control studies.

Main Methods:

• A case-control study involving adult acute leukemia patients.
• Examined 1058 deceased first-degree relatives' cancer reports.
• Utilized death certificates and the National Death Index (NDI) for verification, with incomplete identifying information.

Main Results:

• Death certificates were located for 70% of records sent to state registries vs. 32% for the NDI.
• Cancer reports were confirmed for 83% of relatives reported with cancer and 95% reported cancer-free.
• Accuracy varied by cancer site, with prostate cancer confirmation at 86% and breast cancer/leukemia at 50-54%.

Conclusions:

• State vital statistics registries may be more effective than the NDI for verifying family cancer history when identifying information is limited.
• Incomplete identifying information significantly impacts the success rate of NDI searches.
• Improving the accuracy of family cancer history reporting is essential for reliable cancer research.