Peter Shaw

and 15 more

Background: The Florida Association of Pediatric Tumor Programs (FAPTP) has used the Statewide Patient Information Reporting System (SPIRS) since 1980 to track all cases of pediatric cancer. We reviewed the last 40 years of SPIRS data to see how pediatric cancer care has evolved. Methods: We retrospectively analyzed the SPIRS data from 1980 through 2020 in 5-year increments, looking at numbers of new diagnoses, care delivery sites and trial enrollment in Children’s Oncology Group (COG) studies. Results: From 1981-2020 Florida’s population increased almost 88% while the pediatric population only grew 61%. New pediatric cancer diagnoses increased 326% to over 1,000 new cases/year with the median age increasing from 6 to 9. The percentage of patients treated at FAPTP centers grew from 30% to 57% with an annual percentage change (APC) of 10.3% (95% Confidence Interval [CI] of 0.6 to 20.9%) and those with known follow-up rose from 65% to 94%, an APC of 4.5% (95% CI of 3 to 6%). The rate of COG clinical trial enrollment decreased from 32% in 1981-1985 to 20% from 2016-2020, for an APC of 8.91% (95% CI of -13.3 to -4.3%). Conclusions: The striking increase in pediatric cancer cases in Florida over the last 40 years was out of proportion to the population growth. More patients received care at FAPTP centers but a lower percentage were enrolled on COG clinical trials. Improved access to care has not translated into a higher rates of trial enrollment, a deficit which merits further investigation and initiatives.