Journal of Surgical Oncology 2014;109:629–630

EDITORIAL Comparing National Cancer Registries: The National Cancer Data Base (NCDB) and the Surveillance, Epidemiology, and End Results (SEER) Program SANJAY MOHANTY, MD1,2,3

AND

KARL Y. BILIMORIA, MD, MS1,2*

1

Surgical Outcomes and Quality Improvement Center, Department of Surgery and Center for Healthcare Studies, Feinberg School of Medicine, Northwestern University and Northwestern, Memorial Hospital, Chicago, Illinois 2 Division of Research and Optimal Patient Care, American College of Surgeons, Chicago, Illinois 3 Department of Surgery, Henry Ford Hospital, Detroit, Michigan

INTRODUCTION In this issue of the Journal, Bagaria et al. [1] examine adherence to National Comprehensive Cancer Network guidelines using Survival, Epidemiology, and End Results (SEER) data in order to document overuse and underuse of radiotherapy in patients undergoing surgery for extremity and truncal soft tissue sarcomas. Retrospective studies using large national datasets have become an important source of information on trends and patterns of cancer care, particularly as variations in health care service delivery across the country have become well‐recognized, examined, and targeted for public reporting and pay‐for‐performance initiatives. These large datasets offer many advantages, but it can be challenging to compare the relative differences in how these registries are organized, maintained, collect and report data, and what kinds of research and quality questions a given registry is best designed to answer. This article discusses some of the key differences and similarities between two of the most well‐known and largest cancer registries in the U.S.: the SEER program registries and the National Cancer Data Base (NCDB) [2,3].

NCDB AND SEER OVERVIEW SEER is a federal program of the National Cancer Institute (NCI). It was designed to be an epidemiological tool to monitor the incidence and mortality of cancer in the United States with the goal of reducing the burden of cancer. The program aggregates and reports data on demographics, tumor characteristics, and survival from 17 regional registries scattered over the U.S. Data collection began in 1973 in an initial set of seven regions, which were selected on the basis of their ability to report accurate data and to target epidemiologically significant populations, essentially reflecting the sociodemographic characteristics from the U.S. census. Since then, the number of involved SEER registries has grown, and there continues to be a focus on groups that have been traditionally understudied. These regions include several large metropolitan areas, entire states (e.g., California), and a mix of suburban and rural communities across the country, covering approximately 28% of the U.S. population [2]. The NCDB is the largest cancer registry in the world [3]. It was started in 1989 by the American College of Surgeons (ACS) and its Commission on Cancer (CoC) Program, a multidisciplinary group of professional organizations dedicated to improving cancer care. In addition to setting standards and its research and educational activities,

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the CoC also accredits cancer centers, which it designates based on a hospital’s ability to provide a range of services along the spectrum of cancer care. Though contributing data was initially voluntary, now all CoC‐accredited hospitals are required to report all their cancer cases to the NCDB. Over 1,500 hospitals currently report to the NCDB. This total includes VA hospitals and nearly all NCI‐designated cancer centers. The registry collects data on patient factors, tumor characteristics and staging information, various treatment information, and outcomes, accounting for 70% of all new cancer diagnoses nationwide, which amounts to more than 1 million cases annually and 24 million cases since 1985 [4].

SIMILARITIES Both registries result in large national datasets with similar patient, tumor, and treatment variables collected using the same data definitions and coding manual. For SEER, local hospital cancer registries report data to regional cancer registries which then report on to the NCI after performing data validation checks. For the NCDB, local hospital registries directly send their data to the CoC, housed within the ACS headquarters in Chicago. Key variables that are similar for both registries such as demographics, tumor characteristics, and some treatments differ marginally, with generally similar distributions of age, race, cancer stages at diagnosis, and surgical procedures. Maintenance of data integrity is an essential component of both programs, and their commitment to this end is one of the reasons that they remain authoritative, well‐respected sources of cancer information. Data reporting is highly standardized, and validation processes include use of a set of tools from the Center for Disease Control’s National

The authors have no financial disclosures or conflicts of interest. *Correspondence to: Karl Y. Bilimoria, MD, MS, Surgical Outcomes and Quality Improvement Center, Department of Surgery, Feinberg School of Medicine, Northwestern University and Northwestern Memorial Hospital, 676 St Clair St, Arkes Pavilion Ste 6‐650, Chicago, IL 60611. Fax: (312)695‐ 1462. E‐mail: [email protected] Received 3 January 2014; Accepted 4 January 2014 DOI 10.1002/jso.23568 Published online 25 January 2014 in Wiley Online Library (wileyonlinelibrary.com).

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Program of Cancer Registries that ensure consistency of coding rules and regular, ongoing completeness audits. In the case of SEER, each registry is given an annual Data Quality Profile, which is an evaluation of how compliant the registry was over the prior year. Reliability studies are also conducted on registrars to ensure consistency. Similarly, before annual reports are sent to hospitals, the NCDB performs extensive quality reviews and direct examination and verification of aggregate data. CoC accreditation mandates clinical review of 10% of case abstracts, which has been incorporated into the data‐collection evaluation process that occurs during accreditation site visits every 3 years.

DIFFERENCES The differences between SEER and the NCDB generally come about as a result of their respective purposes: SEER is an epidemiological tool while the NCDB is a surveillance tool and more explicit quality improvement resource. Each regional SEER registry requires every hospital in its geographic area to report all cancer diagnoses. As a result, SEER is able to provide population‐based cancer statistics to better measure cancer incidence. The patient demographics within SEER are also comparable to that of the general population with the important exception of some intentional over‐representation of ethnic and racial minorities, particularly Native Americans, Native Hawaiians, and Pacific Islanders. This affords unique opportunities to monitor the distribution of cancer cases in the U.S. and among specific communities and subgroups. Cancer incidence studies are better performed using SEER as opposed to the NCDB since the NCDB is a convenience sample of hospitals accredited by the CoC and does not capture all cases within a defined geographic region like SEER. Another important difference for research purposes is that SEER does not currently provide several key variables: systemic adjuvant therapies, margin status, surgical approach, hospital identifiers (blinded), and hospital characteristics. In contrast, the NCDB was designed to monitor patterns of cancer care at the local hospital level. Though the NCDB has a much larger number and proportion of cases (70% vs. 28%) when compared to SEER, CoC‐accredited hospitals represent only about one‐third of hospitals nationally. Furthermore, the requirement to be an accredited cancer center in order to report to the NCDB results in a selection bias, as these hospitals have more general and cancer‐related resources than non‐accredited hospitals [5]. The NCDB is a powerful resource for quality improvement. Hospitals can benchmark their performance on process measures and outcomes compared to the other 1,500 accredited hospitals in order to identify opportunities for improvement [3]. SEER has no such data feedback mechanism.

Journal of Surgical Oncology

The NCDB has also been a powerful tool for research and several additional variables are included in the available research datasets including margin status, systemic adjuvant therapy information, surgical approach, hospital type. In addition, additional variables are acquired by merging the NCDB with tertiary data sources, such as patient socioeconomic status and driving distance.

SUMMARY SEER and the NCDB are continually evolving registries which have a number of important similarities. While the major strength of SEER is in its population‐based sampling approach to accurately study cancer incidence, the NCDB captures more cancer cases, offers several unique variables for research, and most importantly, has feedback mechanisms to directly assist hospitals in quality improvement. Bagaria and colleagues’ study is an example of how such databases can be used to evaluate variation in a particular treatment pattern as well as adherence to an established cancer care quality measure. Fundamentally, SEER and the NCDB are ideally positioned to study trends in cancer care over time, patterns of care, and rare cancers. By themselves and also via linkages with tertiary data sources, they also allow researchers and policy makers to recognize and understand particular areas of cancer need to decide on resource allocation, identify high‐risk groups, and evaluate cancer control programs and adherence to quality measures. Finally, as examples of highly coordinated and standardized methods of data collection and reporting, the two tell remarkably similar stories of cancer incidence and care over the last several decades.

REFERENCES 1. Bagaria SP, Ashman JB, Daugherty LC, et al.: Compliance with National Comprehensive Cancer Network guidelines in the use of radiation therapy for extremity and superficial trunk soft tissue sarcoma in the United States. J Surg Oncol 2013. 2. Surveillance Research Program, NCI: Surveillance, Epidemiology, and End Results Program. Available at seer.cancer.gov [cited December 18, 2013] 3. Bilimoria KY, Stewart AK, Winchester DP, et al.: The National Cancer Data Base: A powerful initiative to improve cancer care in the United States. Ann Surg Oncol 2008;15:683–690. 4. Cancer Programs, ACS: National Cancer Data Base. Available at www.facs.org/cancer/ncdb [cited December 18, 2013]. 5. Bilimoria KY, Bentrem DJ, Stewart AK, et al.: Comparison of commission on cancer‐approved and ‐nonapproved hospitals in the United States: Implications for studies that use the National Cancer Data Base. J Clin Oncol 2009;27:4177–4181.

Comparing national cancer registries: The National Cancer Data Base (NCDB) and the Surveillance, Epidemiology, and End Results (SEER) program.

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