Kids who survive cancer live with pain and anxiety

"We need a more coordinated approach to their care to help prevent or delay some of these chronic health problems that affect the quality of their lives," says Siobhan Phillips. "We want them to thrive, not simply survive." (Credit: Amir Kuckovic/Flickr)

The number of adults who have survived childhood cancer in the United States has increased—but they face chronic health problems related to their treatment.

A new study, the first to estimate the prevalence of treatment-related chronic disease among survivors of childhood cancer at a national level, shows that as of 2011 there were nearly 400,000 childhood cancer survivors in the US, up 60,000 from 2005.

“We’ve been able to increase the number of survivors of pediatric cancer, but simply curing their disease isn’t enough,” says lead author Siobhan Phillips, assistant professor of preventive medicine at Northwestern University Feinberg School of Medicine.

“We need a more coordinated approach to their care to help prevent or delay some of these chronic health problems that affect the quality of their lives. We want them to thrive, not simply survive.”

Mental and physical conditions

“The magnitude of diseases at relatively young ages is quite striking, since you would not expect many of these diseases to be a problem in the general population until much older ages,” Phillips says.

Among the health problems experienced by childhood cancer survivors are mental impairment, anxiety, pain, and physical limitations that affect daily living.

About 70 percent of the survivors of childhood cancers were estimated to have a mild or moderate chronic condition, and about 32 percent were estimated to have a severe, disabling, or life-threatening chronic condition.

An estimated 35 percent of the survivors, ages 20 to 49, had neurocognitive dysfunction; about 13 to 17 percent of those in this age group had self-reported functional impairment, activity limitations, impaired mental health, pain, or anxiety/fear.

Important questions

“These facts should challenge all of us in the field not to be content simply with improving lifespan, but to dedicate the future of this field to improving the ‘health span’ of our survivors,” says Greg Armstrong, principal investigator of the Childhood Cancer Survivor Study and a pediatrician at St. Jude Children’s Research Hospital.

“Several important research questions arise from these findings as we consider how to increase our understanding of the chronic and late effects of treatment and how to best develop guidelines and interventions to treat these chronic morbidities in this important population,” says coauthor Lynne Padgett, rehabilitation psychologist and program director of the National Cancer Institute at the National Institutes of Health (NIH), which funded the study.

Childhood cancer survivors should have health care providers who are knowledgeable about their increased risk of chronic health problems, Phillips says.

The researchers used cancer incidence and survival data recorded between 1975 and 2011 from nine US Surveillance, Epidemiology, and End Results registries, and data from the Childhood Cancer Survivor Study cohort, which had information on a range of potential adverse and late effects of cancer treatment from more than 14,000 long-term survivors of childhood cancers at 26 cancer centers in the US and Canada. The findings are published in the journal Cancer Epidemiology, Biomarkers & Prevention.

Source: Northwestern University