Melanoma Registry Underreporting in the Veterans Health Administration
Discussion
Data from central cancer registries are used in a variety of fields, from research studies to health policymaking. They are used to “monitor cancer trends over time, show cancer patterns in various populations, identify high-risk groups, guide planning and evaluation of cancer control programs, help set priorities for allocating health resources, and advance clinical, epidemiologic, and health services research.”1
Melanoma underreporting has been demonstrated in previous studies, with the percentage of underreported cases varying from 10.4%11 to 70%.9 A longitudinal study of melanomas in Washington state found that underreporting of cutaneous melanomas increased from 2% to 21% over a 10-year period.10 This trend prompted examination of this study’s data for a similar temporal trend, and none was found.
A 2008 study found that more melanoma cases were being diagnosed or treated at outpatient facilities.9 Such facilities are prone to problems in reporting because they lack in-house reporting systems and knowledge of melanoma reporting requirements.9 A 2011 study of
practicing dermatologists found that many failed to report melanomas to a registry, and more than half were unaware of the requirement.12 Accordingly, underreporting is likely to continue. Results of the present study showed that melanoma underreporting was a major issue at VAPSHCS and that it could occur even in facilities that used in-house reporting systems and were aware of reporting requirements. The primary cause of underreporting was generation and use of local SNOMED codes that were unrecognizable by OncoTraX. A secondary cause was clerical error.
Discovery of unreported cases prompted facility review of procedures for reporting melanomas and expansion of current methods for melanoma discovery. All unreported cases have been entered into the VACCR, the Washington state registry, and the NCDB, which populate the national cancer registries. Contract registry staff were educated regarding melanoma reporting requirements, particularly requirements for melanoma in situ. The 87202 SNOMED code for melanoma in situ also has been added to VistA at VAPSHCS. A follow-up study will be conducted to ascertain whether the interventions have corrected the underreporting of melanoma.
Study Limitations
The cases used in the study were obtained by SNOMED codes, CDW problem lists, and ICD-9 codes. This method may have missed cases that were assigned incorrect SNOMED codes and were not assigned to the problem list, or that were assigned to the problem list after the study period. The authors used a subset of all reportable cases—namely, those biopsied at VAPSHCS. Although this subset constituted the significant majority of reportable cases, the authors do not know the extent of underreporting of cases that were not biopsied at VAPSHCS. The extent to which other VA facilities generate local SNOMED codes also is unknown.
Conclusion
Melanoma underreporting at VAPSHCS is an addressable concern. The primary cause of underreporting was the use of locally generated SNOMED codes that were not recognized by cancer registry software. The present study should be repeated at other VA facilities to determine the extent to which its findings are generalizable.
Acknowledgments
The authors thank Dr. Stevan Knezevich for reviewing cases, Pam Pehan for providing the list of VAPSHCS melanomas accessioned from VistA, and Eddie Alaniz and Eugene Gavrilenko for helping ascertain SNOMED codes.
Author disclosures
The authors report no actual or potential conflicts of interest with regard to this article.
Disclaimer
The opinions expressed herein are those of the authors and do not necessarily reflect those of Federal Practitioner, Frontline Medical Communications Inc., the U.S. Government, or any of its agencies. This article may discuss unlabeled or investigational use of certain drugs. Please review the complete prescribing information for specific drugs or drug combinations—including indications, contraindications, warnings, and adverse effects—before administering pharmacologic therapy to patients.