Abstract

Current cancer registry data cannot distinguish a justified cancer of unknown primary (CUP) diagnosis, where the patient received a complete diagnostic evaluation that was unable to identify the primary tumor, from potentially misclassified patients, documented as CUP but not based on a complete diagnostic evaluation. This misclassification may skew population-based cancer registry surveillance research used to frame and guide translational CUP research. We identified characteristics of patients who received justified vs. potentially misclassified CUP diagnoses in cancer registry data. We developed a conceptual definition of a complete diagnostic evaluation from professional society-recommended guidelines. We translated this definition into procedure codes in the Medicare encounter data. We assessed age, gender, comorbidities, urban or rural residence, income, race, and tumor pathology by receipt of a complete diagnostic evaluation and palliative therapy among 10,575 elderly CUP patients in the Surveillance, Epidemiology, and End Results (SEER)-Medicare dataset. We calculated odds ratios and adjusted probabilities using marginal standardization. Only 35% of elderly CUP patients identified in the cancer registry received a complete diagnostic evaluation. After adjustment for age and comorbidities, socioeconomic barriers to a complete diagnostic evaluation persisted: adjusted odds ratio and 95% confidence interval (AOR) for rural vs. urban 0.8(0.8,0.9) and for highest income vs. lowest income 1.2(1.1,1.4). Patients with vague or undocumented tumor pathology in SEER had 80% lower odds of receiving a complete diagnostic evaluation AOR(95%CI)=0.2(0.2,0.2). Although patients with a complete diagnostic evaluation were twice as likely to receive palliative therapy than those without a complete evaluation, AOR(95%CI)=2.0(1.7,2.3), they only had a 46.7% probability of receiving therapy, 95%CI=(44.4,49.1). Patients without a complete diagnostic evaluation are not limited to the frail and underserved. For accurate assessment of the CUP burden and disparities in utilization of diagnostic care, we recommend that the SEER definition of CUP include the extent of diagnostic inquiry.

Highlights

  • The global availability of cancer registry data has enriched our understanding of cancer epidemiology, risks, and survival [1]

  • We describe and evaluate a cancer of unknown primary (CUP) diagnosis using the extent of diagnostic evaluation to

  • We excluded patients diagnosed on a death certificate, at autopsy, or in a nursing home because the diagnostic evaluation was likely dissimilar to other patients

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Summary

Introduction

The global availability of cancer registry data has enriched our understanding of cancer epidemiology, risks, and survival [1]. We rely on high-quality data for decision-making. Cancer of unknown primary (CUP) presents challenges to cancer surveillance because CUP is a diagnosis of exclusion. CUP is a metastatic cancer where diagnostic tests fail to identify the primary tumor [2,3]. The primary site may have disappeared before diagnosis or is undetectable with current technology. Since the primary site is unknown among CUP patients, oncologists use methods like tumor pathology, histology, and grade to direct palliative treatment decisions [2,3]. Palliative treatment can reduce symptoms, prolong survival, and improve quality-of-life among CUP patients

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