The national cancer data base report on patterns of childhood cancers in the United States

• Published in: Cancer Vol. 80; no. 12; pp. 2321 - 2332
• Main Authors: Grovas, Alfred, Fremgen, Amy, Rauck, Amanda, Ruymann, Frederick B., Hutchinson, Carol L., Winchester, David P., Menck, Herman R.
• Format: Journal Article
• Language: English
• Published: New York John Wiley & Sons, Inc 15-12-1997; Wiley-Liss
• Subjects: Adolescent; American Cancer Society; Biological and medical sciences; Child; Child, Preschool; childhood cancer; Computerized, statistical medical data processing and models in biomedicine; Databases, Factual - statistics & numerical data; Ethnic Groups; Female; General aspects; Humans; Infant; Infant, Newborn; Male; Medical sciences; Medical statistics; National Cancer Data Base; national survey; Neoplasms - epidemiology; Neoplasms - pathology; Neoplasms - therapy; patterns of care; Practice Patterns, Physicians' - statistics & numerical data; Registries - statistics & numerical data; SEER Program; Societies, Medical; survival; Survival Rate; Tumors; United States - epidemiology; United States; North America; America; Human; Biomedical data processing; Database; Malignant hemopathy; Malignant tumor; Child; Statistical study; Public health
• ISSN: 0008-543X; 1097-0142
• DOI: 10.1002/(SICI)1097-0142(19971215)80:12<2321::AID-CNCR14>3.0.CO;2-W

BACKGROUND
Patterns of and progress against childhood cancer have been reported on multi‐institution, regional, national, and international bases by several sources in the past. These sources have included clinical cooperative group trials and population‐based registries. In general, the population‐based surveys have excluded brain tumors of either benign or uncertain behavior. The authors of this article investigated the patterns of data reported for the period 1985‐1993, motivated by their interest in assessing the potential of National Cancer Data Base (NCDB) data to 1) facilitate individual institution review and 2) cover institutions that are not members of the Pediatric Oncology Group or the Children's Cancer Group, which are both national clinical cooperative groups.
METHODS
Six annual calls for data, starting with a call for 1985 and 1988 cases, were issued to approximately 2100 hospitals with cancer programs (1340 programs approved by the Commission on Cancer of the American College of Surgeons and 760 other programs). The baseline data items of the NCDB included patient demography, tumor characteristics, initial treatment, and follow‐up. The data for each patient were coded in the traditional manner by trained cancer registrars before being transmitted to the NCDB in standard format.
RESULTS
In the most recent year for which data were reported, the NCDB included 42% of all estimated U.S. childhood cancers. The cases were reported by institutions that were members of the Pediatric Oncology Group and the Children's Cancer Group as well as nonmember institutions. The distribution of diagnostic groups reported to the NCDB was generally similar to that reported to SEER, except for lymphomas and brain cancer (the NCDB series included benign as well as malignant brain tumors). The distribution of diagnostic groups reported to the NCDB did not change over the 9‐year reporting period (1985‐1993). With regard to ethnicity, the most varied distribution of diagnostic groups was found among African American patients. For many types of cancer, the survival of those patients reported to the NCDB was similar to that of patients included in the SEER population‐based series. These cancers included Wilms' tumor (NCDB 89% vs. SEER 88%), non‐Hodgkin's lymphoma (NCDB 74% vs. SEER 70%), soft tissue sarcomas (NCDB rhabdomyosarcomas 70% and sarcomas 79% vs. SEER soft tissue sarcomas 71%), and neuroblastoma (NCDB 58% vs. SEER 57%).
CONCLUSIONS
The authors concluded that the number of brain tumors of benign and uncertain behavior being diagnosed were significant enough in number that they should be included in regional and national cancer registries that report data for clinical purposes. They further concluded that for reasons of data inclusion and institutional coverage, the NCDB will be an important data base for pediatric cancers that will warrant increased use by pediatric investigators. Cancer 1997; 80:2321‐2332. © 1997 American Cancer Society.
National patterns of childhood cancer, reflected in cancer registry data from U.S. hospitals, are presented in this article.