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Childhood Cancer: Patterns of Protocol Participation in a National Survey

Dr. Shochat is Chairman of the Department of Surgery at St. Jude Children’s Research Hospital, Memphis, TN.
Dr. Fremgen is Editor of the Journal of Registry Management, National Cancer Registrar’s Association, Cathedral City, CA.
Dr. Murphy is Chief, Division of Hematology and Oncology, and Professor of Pediatrics at Northwestern University Hospital, Children’s Memorial Hospital, Chicago, IL.
Ms. Hutchison is Director of Education, Cancer Registry at Licking Memorial Hospital, Newark, OH.
Dr. Donaldson is Professor of Radiation Oncology at Stanford University Medical School, Stanford, CA.
Dr. Haase is Clinical Professor of Surgery at the University of Colorado School of Medicine and at Children’s Hospital, Denver, CO.
Dr. Provisor is at Methodist Hospital, Indianapolis, IN.
Ms. Clive-Bumpus is retired from the American College of Surgeons, Chicago, IL.
Dr. Winchester is Chair of the Department of Surgery, Evanston Northwestern Healthcare, Evanston, IL.

Cancer is still the chief cause of death by disease in children, ages one to 14. As improved survival rates have been reported for pediatric cancer patients who are treated on controlled clinical trials, it is important to understand the national utilization of such protocols.

In 1993, a survey of childhood cancer was conducted by the Commission on Cancer of the American College of Surgeons. Data regarding type of disease, protocol participation, age, sex, race, insurance, and geographical region were voluntarily submitted by more than 200 hospital cancer registries. Included in this study were 2,208 children and adolescents 21 years of age or younger who were diagnosed in 1987, and 2,293 who were diagnosed in 1992. Pediatric centers (i.e., members of the Pediatric Oncology Group or Children’s Cancer Group) submitted 55.1% of the cases and other institutions, 44.9%.

It was found that more patients treated at pediatric centers were on protocols (53.8%) than were those treated at other institutions (25.1%). In general, the younger the patient (five years of age or younger), the greater the chance of being on protocol (pediatric centers, 63.7%; others, 42.0%), with very poor adolescent protocol participation (pediatric centers, 34.8%; others, 12.1%). Nevertheless, overall protocol participation was still lower than expected, even in children younger than five years of age, and adolescent participation in controlled clinical trials was low and similar to adult figures. The percentage of childhood cancer cases seen at pediatric centers was smaller than in other series. It was concluded that pediatric cancer centers need to continue to encourage patient participation in controlled clinical trials, with special emphasis on adolescents.

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