Mortality ascertainment of participants in the National Wilms Tumor Study using the National Death Index: comparison of active and passive follow-up results
2007

Tracking Mortality in Childhood Cancer Survivors

Sample size: 6217 publication 10 minutes Evidence: moderate

Author Information

Author(s): Cecilia A Cotton, Susan Peterson, Patricia A Norkool, Norman E Breslow

Primary Institution: University of Washington

Hypothesis

Can record linkage through the National Death Index (NDI) effectively substitute for missing follow-up data in childhood cancer survivors?

Conclusion

The study concludes that the NDI cannot reliably fill in missing follow-up data for actively followed populations, leading to inflated survival estimates.

Supporting Evidence

  • The NDI matched 709 of the 789 known decedents, showing a sensitivity of 89.9%.
  • No matches were found among 1,052 subjects known to be alive, indicating a specificity of 100%.
  • Factors like lack of SSN and Hispanic ethnicity were associated with lower match rates.

Takeaway

This study looked at how well researchers can find out if childhood cancer survivors are still alive using a national death database, and it found that this method doesn't work well for kids.

Methodology

The study compared mortality ascertainment via active follow-up and record linkage to the NDI for a cohort of childhood cancer survivors.

Potential Biases

Potential bias due to factors like ethnicity and social security number availability affecting match rates.

Limitations

The study may not generalize to populations with different follow-up practices or demographics.

Participant Demographics

Participants were primarily children with renal neoplasms, with a significant proportion being non-Hispanic Caucasian.

Statistical Information

P-Value

p<0.001

Confidence Interval

(75.4, 79.9)

Statistical Significance

p<0.001

Digital Object Identifier (DOI)

10.1186/1742-5573-4-5

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