Introduction
Overall, pediatric cancer cure rates have improved in the United States in the last 40 years, mostly due to incremental improvements forged by successive clinical trials run by pediatric cooperative groups. These groups included the Children’s Cancer Group (CCG), the Pediatric Oncology Group (POG), The National Wilms Tumors Study Group (NWTS) and the Intergroup Rhabdomyosarcoma Study Group (IRSG), all of which merged in 2000 to form the largest current pediatric cooperative oncology organization in the world, the Children’s Oncology Group (COG). In the mid-1970s, 58% of children aged 0 to 14 years and 68% of those adolescents aged 15 to 19 years diagnosed with cancer survived at least 5 years (1). From the years 2010–2016, 84% of children and 85% of adolescents diagnosed with cancer were alive at 5 years from diagnosis, showing ongoing improvement (2). Analysis of these data shows that the cancer mortality rate (the number of deaths due to cancer/100,000 people per year) among children and adolescents decreased by over 50% from 1975 to 2017 (2).
The National Cancer Institute’s Surveillance, Epidemiology and End Results (SEER) Program began collecting data in 1973 to better study cancer incidence and outcomes in the United States. It initially included Connecticut, Iowa, New Mexico, Utah, Hawaii and the Detroit and San Francisco-Oakland metropolitan areas. It has subsequently expanded to several other states and cities. These registries are not exclusively pediatric, but rather contain cancer patients of all ages.
Also in 1973, a statewide cancer initiative was started in Florida to focus on the pediatric population. The non-profit Florida Association of Pediatric Tumor Programs, (FAPTP) was created to bring together pediatric cancer centers in the state to promote clinical and research collaboration. Since 1980, the FAPTP has used the Statewide Patient Information Reporting System (SPIRS) to track all new cases of pediatric cancer in the state from birth through 21 years of age. In the early 1990’s, analysis of the data led to several publications looking at pediatric cancer incidence (3), patterns of care (4) and progress in care (5) in the state.
From 1981-2020 Florida’s population grew almost 88%. During that time FAPTP centers have increased in number from 13 to 16. As the SPIRS data have not been analyzed for almost 20 years, we re-examined the data to determine how pediatric cancer care has evolved on a state-wide scale in the last 40 years since the SPIRS was created. Clinical trial enrollment is part of the SPIRS data set, with patients being enrolled on studies through the CCG or POG through the year 2000, after which they merged into the COG. The clinical trial enrollment data in the SPIRS only accounts for those patients who participated in the studies of these large groups.