The current status of follow-up services for childhood cancer survivors, are we meeting goals and expectations: A report from the consortium for New England childhood cancer survivors

Abstract

National guidelines for follow-up care of childhood cancer survivors have been established. It has not been determined if pediatric oncology programs have successfully incorporated these standards for long term survivor care into clinical practice. To describe survivor services available in a geographically and socio-economically diverse region of the US we surveyed all 12 academic institutions with pediatric oncology programs in the New England (NE) region. Participating sites diagnose a median of 34 (range 10-250) new pediatric cancers annually. The 12 institutions have 11 survivor clinics. Clinics are staffed by: pediatric oncologists (11/11); nurse practitioners (7/11); social workers/psychologists (9/11); RNs (5/11); primary care physicians (3/11); and sub-specialists (3/11). Most clinics recommend annual follow-up for all survivors (7/11); however, point of entry into survivor programs is variable. Treatment summaries and care plans are part of survivor care at each program. Almost all (10/11) refer to sub-specialists to manage late effects. Only 4 programs identified a policy for transitioning survivors to adult care (2 to adult survivor programs, 2 to adult primary-care) and 4 reported this as a problem. Two clinics had no designated funding for survivor services; 8/11 receive institutional support; 5/11 philanthropic. Five institutions conduct research in survivorship (1 government-funded, 2 philanthropy-funded, and 2 both). Pediatric oncology services in the NE region are making progress toward meeting follow-up care goals for childhood cancer survivors. Funding for resource intense programs, transitioning care to adult clinical services, volume of sub-specialty referral, and participation in research are common challenges.