3.1 | Cancer Registry and Childhood Cancer Survivorship
Cohort Construction
A total of 3,117 patients less than or equal to eighteen years of age at
diagnosis were captured by the institutional cancer registry between
January 1, 1994 and November 30, 2012. Of these patients, 2,206 were
considered analytic cases in the cancer registry and included in our
analysis. Based on ICCC-3 coding, 1312 were pediatric oncology patients
and 894 were pediatric neuro-oncology patients, of whom 871 and 546 were
seen in PHO or PNO clinic during their estimated on treatment window,
respectively. For patients not seen in either clinic, a manual chart
review of a 10% random sample of patients revealed that nearly all
patients were either referred for transplant (hematopoietic stem cell or
solid organ) after receipt of initial therapy at an outside institution
or they were treated exclusively by another department (i.e.
dermatology, gynecology-oncology, medical oncology or surgical
oncology). For the PNO cohort, 274 patients died with or without
documented relapse (30.6%) and ninety-seven (10.9%) had disease
recurrence without documented death during the seven-year follow-up
period, for a total of 275 PNO event-free survivors. For the PHO cohort,
312 patients died with or without documented relapse (23.4%) and 172
(13.1%) had disease recurrence without documented death during the
seven-year follow-up period, for a total 590 PHO event-free survivors
included in the analytic cohort (Figure 1).