Long-Term Morbidity in Survivors of Childhood Cancer with Down Syndrome

This project will help to identify late toxicities and long-term follow-up needs specific to childhood cancer survivors with Down Syndrome (DS). Children with DS have a higher risk of certain cancers, particularly childhood leukemias. In recent years modified treatment regimens for leukemia patients with DS have been used because of acute toxicities and differences in overall survival. Nurses at the bedside and nurses involved in the care of survivors rely on information about treatment toxicities to help in the care and education of patients with DS and to guide their follow-up care. However, little is known about the long-term health or incidence of late toxicities in the subpopulation of childhood cancers survivors with DS.

In this study, we will examine 60 cases of childhood cancer survivors who self-identified as having DS. These cases will be obtained from the Childhood Cancer Survivor Study (CCSS), a cohort of over 14,000 childhood cancer survivors diagnosed between 1970 and 1986. In subjects identified as survivors with DS, self-reports regarding new medical conditions at least 5 years from diagnosis (considered late toxicities or 'late effects') will be collected and evaluated. A control group of survivors without DS will be used to determine if there are differences in late effects reported by survivors with DS compared to what is reported in the general survivor population. This information will help nurses to improve evidence-based care of patients with DS during treatment and throughout the long-term follow-up of this small, yet potentially at-risk, group of patients.