A Clinic-Based, Comprehensive Care Model for Studying Late Effects in Long-Term Survivors of Pediatric Illnesses

Abstract

Objective. Long-term survivors of several childhood illnesses are at risk for multiple late effects of their illness or therapy, and children with documented toxic exposures may also experience long-term health consequences. Clinical studies of these effects are difficult to conduct. The Cardiovascular Status in Childhood Cancer Survivors Study is an established study that highlights the ability to perform comprehensive clinical investigations when patients are cared for in a formal, long-term follow-up clinic. This clinic model facilitates long-term retention and recruitment of patients, allowing comprehensive clinical studies of late effects of illness or exposures, in this case, of cardiovascular complications of cancer treatment during childhood. Methods. The study is funded through the National Institute of Health Office of Cancer Survivorship. Participants are recruited from the Long-Term Survivors Clinic at the University of Rochester. The clinic provides care for all survivors of childhood cancer in the region. The Long-Term Survivors Clinic provides medical care and psychosocial and educational support to patients and facilitates coordination of care. Patients remain in close contact with clinic staff for extended periods. Results. We recruited a representative sample of this long-term survivor population, with a wide range of ages, diagnoses, and time since diagnosis. Longitudinal collection of detailed clinical data will enable us to conduct cohort studies of late effects as well as case-control studies of toxic exposures. Conclusions. The success of this study shows the advantages of formal programs for continued care of patients with chronic illnesses or treatment or toxic exposures. The Long-Term Survivors Clinic provides an excellent model for clinical care and research that is applicable to multiple pediatric and young adult populations.