Abstract
Background
Substantial resources are dedicated to long-term follow-up within cancer registries; however, the completeness of these data is poorly characterized. Our objectives were to quantify long-term cancer follow-up data completeness and the effort required to collect these data using the National Cancer Database (NCDB).
Methods
To quantify data completeness, patients diagnosed with cancer in 1989 were identified in the NCDB and loss to follow-up rates were assessed for 25 years after diagnosis. To quantify data collection effort, patients diagnosed from 1989 to 2014 who were alive and eligible for follow-up in 2014 were identified and the effort to perform patient follow-up was obtained via a survey of tumor registrars. The effort to perform follow-up beyond various intervals after diagnosis was calculated.
Results
In total, 484,201 patients at 958 hospitals were diagnosed with cancer in 1989. After 5 years, 6.5% of patients were lost to follow-up (13.1% of living patients), 50.3% were deceased, and 43.2% had ongoing follow-up. After 15 years, 22.9% were lost to follow-up (68.7% of living patients), 66.7% were deceased, and 10.5% had ongoing follow-up. By 25 years, loss to follow-up increased to 28.6% (93.7% of living patients), 69.5% were deceased, and 1.9% had ongoing follow-up. In 2014, 522,838 h were spent performing follow-up for 2,091,353 patients at 1456 hospitals who were >15 years from their initial cancer diagnosis.
Conclusions
While 5-year follow-up is excellent in the NCDB, loss to follow-up increases over time. The impact of curtailing data collection is under investigation and follow-up duration requirements will be re-evaluated.
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Conception or design of the work: All authors. Acquisition, analysis, or interpretation of data: Brajcich, Palis, McCabe, Nogueira, Bilimoria, Nelson. Drafting of the work: Brajcich, Nogueira, Nelson. Critical revision for important intellectual content: All authors. Drs Brajcich and Nelson had full access to all the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.
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Dr. Brajcich is supported by the American College of Surgeons as part of the Clinical Scholars in Residence program and by a training grant from the National Cancer Institute (T32CA247801). Funding organizations had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.
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Brajcich, B.C., Palis, B.E., McCabe, R. et al. Twenty-Five Years of Cancer Follow-Up; Is the Data Worth the Effort?. Ann Surg Oncol 29, 828–836 (2022). https://doi.org/10.1245/s10434-021-10668-w
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DOI: https://doi.org/10.1245/s10434-021-10668-w