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Prevalence of Missing Data in the National Cancer Database and Association With Overall Survival
Open accessPublished version of a preprint
Abstract
Importance: Cancer registries are important real-world data sources consisting of data abstraction from the medical record; however, patients with unknown or missing data are underrepresented in studies that use such data sources. Objective: To assess the prevalence of missing data and its association with overall survival among patients with cancer. Design, Setting, and Participants: In this retrospective cohort study, all variables within the National Cancer Database were reviewed for missing or unknown values for patients with the 3 most common cancers in the US who received diagnoses from January 1, 2006, to December 31, 2015. The prevalence of patient records with missing data and the association with overall survival were assessed. Data analysis was performed from February to August 2020. Exposures: Any missing data field within a patient record among 63 variables of interest from more than 130 total variables in the National Cancer Database. Main Outcomes and Measures: Prevalence of missing data in the medical records of patients with cancer and associated 2-year overall survival. Results: A total of 1 198 749 patients with non-small cell lung cancer (mean [SD] age, 68.5 [10.9] years; 628 811 men [52.5%]), 2 120 775 patients with breast cancer (mean [SD] age, 61.0 [13.3] years; 2 101 758 women [99.1%]), and 1 158 635 patients with prostate cancer (mean [SD] age, 65.2 [9.0] years; 100% men) were included in the analysis. Among those with non-small cell lung cancer, 851 295 patients (71.0%) were missing data for variables of interest; 2-year overall survival was 33.2% for patients with missing data and 51.6% for patients with complete data (P < .001). Among those with breast cancer, 1 161 096 patients (54.7%) were missing data for variables of interest; 2-year overall survival was 93.2% for patients with missing data and 93.9% for patients with complete data (P < .001). Among those with prostate cancer, 460 167 patients (39.7%) were missing data for variables of interest; 2-year overall survival was 91.0% for patients with missing data and 95.6% for patients with complete data (P < .001). Conclusions and Relevance: This study found that within a large cancer registry-based real-world data source, there was a high prevalence of missing data that were unable to be ascertained from the medical record. The prevalence of missing data among patients with cancer was associated with heterogeneous differences in overall survival. Improvements in documentation and data quality are necessary to make optimal use of real-world data for clinical advancements.
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“For example, studies on cancer registries reveal frequent missing data due to inadequate documentation, such as absent cancer stage or test results, which affects the diagnosis and evaluation process and lowers survival rates [178].”
From Toward Safer Diagnoses: A SEIPS-Based Narrative Review of Diagnostic Errors (2026) · cites this paper as [178]
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Metadata
- Authors
- Yang, D. X., Khera, R., Miccio, J. A., Jairam, V., Chang, E., Yu, J. B., Park, H. S., Krumholz, H. M., & Aneja, S.
- Affiliations
- Yale University (US)
- Corresponding author
- Aneja, Sanjay
- ORCID
- Venue
- JAMA Network Open
- Publisher
- American Medical Association (AMA)
- Published
- 2021-03-23
- Volume
- 4
- Issue
- 3
- Pages
- e211793
- ISSN
- 2574-3805 (ISSN-L)
- PMC
- PMC7988369
- OpenAlex
- W3135917060
- Cited by
- 135
- References
- 55
- Citations by year
- 2026: 28 · 2025: 22 · 2024: 23 · 2023: 33 · 2022: 26 · 2021: 3
- FWCI
- 7.74
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- cc-by
- Locations
- JAMA Network Open (publishedVersion, cc-by)
- medRxiv (acceptedVersion)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Funders
- Conquer Cancer Foundation
- Yale University
- Yale SPORE in Lung Cancer
- Topics
- Health Sciences › Medicine › Oncology › Global Cancer Incidence and Screening
- Health Sciences › Health Professions › Health Information Management › Medical Coding and Health Information
- Health Sciences › Health Professions › Health Information Management › Electronic Health Records Systems
- Keywords
- missing data, data quality, cancer registry, National Cancer Database, overall survival, non-small cell lung cancer, breast cancer, prostate cancer, data abstraction, real-world data, data sharing restrictions, data access restrictions
- MeSH terms
- Data Management, Aged, Female, Follow-Up Studies, Humans, Male, Middle Aged, Neoplasms, Registries, Retrospective Studies, United States, Prevalence, Survival Rate, Databases, Factual
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