Moving Beyond Cancer-Free: Evolving Paradigms In Pediatric Oncology And Cancer Survivorship

As cure rates for childhood cancers have improved dramatically in recent decades, there is growing recognition that “cancer-free” cannot be the only metric of success for treating these patients. There remains a significant burden of cure both during treatment from acute toxicities, as well as decades after treatment has ended from chronic sequelae. This thesis comprises five studies utilizing a range of both quantitative and qualitative methods in the pediatric cancer population to illustrate the active challenges and considerations in this patient population. A prospective cohort study in children with acute lymphoblastic leukemia demonstrates a significant quality of life burden during therapy by showing that many of these patients experience impairment in physical and emotional functioning. A retrospective cohort study in neuroblastoma survivors finds significant cognitive and behavioral impairment, highlighting the prevalence and severity of long-term effects from treatment. Two studies examining data from Yale’s childhood cancer survivorship clinic show that health services for these patients is a major challenge, as the majority of patients do not attend survivorship clinic even up to 10 years post-diagnosis, and the primary care providers of survivors generally feel uncomfortable being responsible for survivorship care. Lastly, a pilot study utilizing activity trackers in pediatric cancer survivors demonstrates the potential feasibility and efficacy of such an intervention to increase exercise in hopes of mitigating late effects. This study represents the type of future research that may help lessen the burden of therapy-related chronic conditions. Moving forward, successful cancer treatment in children must address quality of life costs and therapy-related chronic conditions, in addition to managing the disease itself. This evolving paradigm in pediatric oncology requires future research in both optimizing health services for this patient population, as well as interventions during and after treatment to help minimize long-term toxicities