Health-related Quality of Life (HR-QOL) and Chronic Health Conditions in Survivors of Childhood Acute Myeloid Leukemia (AML) with Down Syndrome (DS): A Report From the Children’s Oncology Group

Abstract

Survival rates for children with Down syndrome (DS) and acute myeloid leukemia (AML) are high; however, little is known regarding the health-related quality of life (HR-QOL) of these survivors. Individuals who survived ≥5 years following diagnosis of childhood AML were invited to complete parent or patient-report surveys measuring HR-QOL and chronic health conditions. Twenty-six individuals with DS had a median age at diagnosis of 1.8 years (range, 0.77-10.9) and median age at interview of 15 years (range 8.3-27.6). Participants with DS and AML were compared to AML survivors without DS whose caregiver completed a HR-QOL survey (CHQ-PF50). Seventy-seven percent of survivors with DS reported ≥1 chronic health condition compared to 50% of AML survivors without DS (p=0.07). Mean physical and psychosocial QOL scores for children with DS and AML were statistically lower than the population mean, though not discrepant from AML survivors without DS. Although the overall prevalence of chronic health conditions in survivors with DS is higher than in survivors without DS, prior studies of children with DS have reported similarly high rates of chronic health conditions, suggesting that AML therapy may not substantially increase this risk.

Long‐term sequelae in survivors of childhood leukemia with Down syndrome: A childhood cancer survivor study report

“…Previous reports on late effects in leukemia survivors with DS are sparse. A recent report from the Children's Oncology Group showed that 77% of AML survivors with DS reported at least 1 chronic medical condition compared with 50% of AML patients without DS . A report evaluating late cardiomyopathy in AML patients with and without DS showed no difference in the incidence of this condition .…”

“…A recent report from the Children's Oncology Group showed that 77% of AML survivors with DS reported at least 1 chronic medical condition compared with 50% of AML patients without DS. 29 A report evaluating late cardiomyopathy in AML patients with and without DS showed no difference in the incidence of this condition. 30 We also identified that children with DS and leukemia do not seem at higher risk for late cardiac conditions than those without DS despite the known increased incidence of cardiovascular malformations.…”

Late mortality and morbidity among long‐term leukemia survivors with Down syndrome: A nationwide population‐based cohort study

“…Here, survivors of leukemia scored poorer on neuropsychological tests compared with leukemia‐free individuals with DS. The other studies compared HR‐QoL or self‐reported chronic conditions among leukemia survivors with DS and leukemia survivors without DS. Leukemia survivors with DS have lower HR‐QoL, more chronic conditions, and more severe chronic condition compared with leukemia survivors without DS.…”

“…Despite their increased incidence of leukemia, only three studies of late effects focus on survivors with DS. DS survivors had poorer results on neuropsychological tests compared to leukemia‐free individuals with DS, have a lower health‐related quality of life (HR‐QoL), and more chronic diseases compared with leukemia survivors without DS. The limited knowledge about late effects among DS leukemia survivors is problematic because DS survivors constitute an important subgroup of individuals with childhood leukemia with distinct medical needs.…”

Clinical implications of immune‐mediated diseases in children with Down syndrome

“…The prognosis of this subtype is better compared to the other AML subtypes in children without Down syndrome . Also, the quality of life in AML survivors with Down syndrome appears similar to that of survivors of AML without Down syndrome …”