The Clinical and Research Infrastructure of a Childhood Cancer Survivor Program

Abstract

Increased knowledge and awareness of the long-term complications from childhood cancer has illuminated a clear need for healthcare delivery systems that address the specific needs of survivors. We report a descriptive framework of such a healthcare infrastructure within a single institution to provide education for other healthcare professionals developing a cancer survivorship program at their institution. This cross-sectional study described the structure and patient population of the Cancer Survivor Program (CSP) in the Department of Pediatrics at the University of Minnesota (UM). It relied on the UM Cancer Survivorship Database maintained by the Division of Pediatric Hematology/Oncology. Demographic and relevant survivorship information is summarized for survivors seen from August 1, 2003 to May 1, 2013. The study population included 504 survivors of childhood cancer with a mean age of 21.4 years (range 3–59 years). Most were non-Hispanic white (455/504, 90 %) and the mean interval between prior cancer diagnosis and entry into the CSP was 13.7 years (range 1–56 years). The breakdown of cancer diagnoses among survivors is reflective of the incidence of childhood malignancies in the general population with the exception of an under-representation of survivors with brain tumors. Nearly 25 % of survivors received their oncology treatment at an outside institution. With the appropriate healthcare infrastructure, a pediatric cancer survivorship program can meet the needs of a large survivor population, many of whom are adults and are seeking care from outside institutions.