Journal d'oncologie intégrative

Cancer Survivorship Care for Adult Survivors of Childhood Cancer: An Adult Based Model Facilitating Multi-Disciplinary Long-Term Follow-Up Care, Education and Research

Abstract

Karen E Kinahan, Lynne Wagner, Timothy Pearman, Stacy Sanford and Aarati Didwania

As the number of adult survivors of childhood cancers continues to grow, the challenges of long-term follow-up (LTFU) care escalate. When adult survivors of childhood cancer are followed in a pediatric oncology setting their care can be fragmented, leading to barriers for both providers and patients. To address the need for continued LTFU care as survivors age out of the pediatric medicine arena, the STAR (Survivors Taking Action & Responsibility) Program was established in June of 2001 within an adult oncology setting at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. The 11-year old program currently has over 320 survivors enrolled (ages 19-60, all diagnosed at 21 years of age or younger). The program’s three main foci are (1) comprehensive, long-term followup clinical care, (2) patient/family education and (3) research. The STAR team includes a general internal medicine physician, a clinical health psychologist, and an advanced practice nurse with expertise in childhood cancer and late effects from cancer therapy. The program facilitates referrals to specialty care as appropriate. Patient-oriented events allow opportunities for networking, outreach and education to assist patients in becoming autonomous in their comprehensive care and survivorship. The purpose of this article is to share our experiences with the implementation of this program, offer information on how to build a similar model in institutions caring for childhood cancer patients and adult survivors of childhood cancer.