Childhood Cancer Survivor Study: An Overview

Dr. Greg Armstrong with a study participant

Dr. Greg Armstrong, principal investigator of the Childhood Cancer Survivor Study, with a study participant.

Credit: St. Jude Children’s Research Hospital

In 2016, it was estimated that there were 15.5 million cancer survivors in the United States. As of 2015, at least 429,000 of these survivors were first diagnosed when they were under the age of 20. Advances in cancer treatment mean that today 84 percent of children diagnosed with cancer are alive at least five years after diagnosis. Many ultimately will be considered cured. As a consequence, interest is growing in the long-term health of these survivors.

Health problems that develop years later because of a cancer treatment are known as late effects. (For more information, see Late Effects of Treatment for Childhood Cancer.) The Childhood Cancer Survivor Study (CCSS), funded by the National Cancer Institute and other organizations, was started in 1994 to better understand these late effects, increase survival, and minimize harmful health effects. Greg Armstrong, M.D., M.S.C.E., at St. Jude Children’s Research Hospital in Memphis, Tenn., is the principal investigator for this research study. A list of participating research centers can be found on the CCSS website.

Originally, childhood cancer survivors diagnosed between 1970 and 1986 were identified for this long-term, retrospective cohort study from participating centers in the United States and Canada. More than 14,000 survivors were surveyed and followed for long-term health outcomes. In addition, about 4,000 of their siblings were recruited as comparison subjects. Due to the significant changes in therapy for children with cancer over the past 30 years, a second group of about 10,000 survivors diagnosed between 1987 and 1999 and about 1,000 of their siblings were also recruited for the study. Therefore, the CCSS cohort includes three decades of survivors of cancers in children and adolescents.

Researchers gathered information from the survivors’ medical records on primary treatment exposure that included surgery, radiotherapy, chemotherapy, or a combination of treatments.

CCSS is an excellent resource for the development, testing, and dissemination of intervention strategies. Several randomized intervention studies among high-risk childhood cancer survivor populations have been completed (e.g., studies about breast cancer screening, cardiovascular screening, skin cancer screening, and smoking cessation). CCSS-based research provided the foundation for all of these studies. Intervention studies are ongoing to reduce obesity in survivors of acute lymphoblastic leukemia and to reduce the underdiagnosis and undertreatment of traditional cardiovascular risk factors—including hypertension, diabetes mellitus, and dyslipidemia. A third intervention trial to improve breast cancer screening with both mammography and breast MRI has recently been initiated.

Researchers who have studied CCSS data so far have identified a number of potential late effects, including premature menopause, stroke, and subsequent cancers. Childhood cancer survivors should get close, long-term follow-up from doctors who know about these kinds of complications, say experts. To address this issue, the Children’s Oncology Group (COG) has prepared a resource for physicians called “Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers”.

The list below includes links to journal abstracts and articles for just some of the most recent studies that have been published using data from the CCSS. A more comprehensive list can be found on the CCSS site.

General Information about the Late Effects of Treatment in Children and Adolescents with Cancer

  • Association of exercise with mortality in adult survivors of childhood cancer
    (Jun 3, 2018, JAMA Oncology; see the journal abstract)
  • “Job lock” among long-term survivors of childhood cancer: A report from the Childhood Cancer Survivor Study
    (May 1, 2018, JAMA Oncology; see the journal abstract)
  • Assessing health insurance coverage characteristics and impact on health care costs, worry and access: A report from the Childhood Cancer Survivor Study
    (December 2017, JAMA Internal Medicine; see the journal article)
  • Effect of temporal changes in therapeutic exposure on self-reported health status in childhood cancer survivors 
    (January 17, 2017, Annals of Internal Medicine; see the journal abstract)
  • Childhood cancer survivorship research in minority populations: A position paper from the Childhood Cancer Survivor Study
    (August 1, 2016, Cancer; see the journal article)
  • Racial/ethnic differences in adverse outcomes among childhood cancer survivors: The Childhood Cancer Survivor Study
    (May 10, 2016, Journal of Clinical Oncology; see the journal article)
  • Reduction in late mortality among 5-year survivors of childhood cancer
    (March 3, 2016, New England Journal of Medicine; see the journal article)

Subsequent Cancers and Other Medical Concerns

  • Hypothyroidism after radiation therapy for childhood cancer: A report from the Childhood Cancer Survivor Study
    (August 2018, Radiation Research; see the journal abstract)
  • Late infection-related mortality in asplenic survivors of childhood cancer: A report from the Childhood Cancer Survivor Study
    (June 1, 2018, Journal of Clinical Oncology; see the journal abstract)
  • Prediction of ischemic heart disease and stroke in survivors of childhood cancer
    (January 1, 2018, Journal of Clinical Oncology; see the journal abstract)
  • Genome-wide association study identifies susceptibility loci that modify radiation-related risk for breast cancer after childhood cancer
    (November 1, 2017, Journal of the National Cancer Institute; see the journal article)
  • Financial burden in survivors of childhood cancer: A report from the Childhood Cancer Survivor Study
    (October 20, 2017, Journal of Clinical Oncology; see the journal abstract)
  • Morbidity and mortality associated with meningioma after cranial radiotherapy: A report from the Childhood Cancer Survivor Study
    (May 10, 2017, Journal of Clinical Oncology; see the journal article)
  • Temporal trends in treatment and subsequent neoplasm risk among 5-year survivors of childhood cancer, 1970-2015
    (Feb. 28, 2017, Journal of American Medical Association; see the journal article)
  • Breast cancer risk in childhood cancer survivors without a history of chest radiotherapy: A report from the Childhood Cancer Survivor Study (CCSS)
    (March 20, 2016, Journal of Clinical Oncology; see the journal article)

Reproductive Complications

  • Nonsurgical premature menopause and reproductive implications in survivors of childhood cancer: A report from the Childhood Cancer Survivor Study
    (Mar 1, 2018, Cancer; see the journal abstract)
  • Pregnancy after chemotherapy in male and female survivors of childhood cancer treated between 1970 and 1999: A report from the Childhood Cancer Survivor Study cohort
    (May 2016, Lancet Oncology; see the journal article)

Psychosocial Issues

  • Social adjustment in adolescent survivors of pediatric central nervous system tumors: A report from the Childhood Cancer Survivor Study
    (Epub, Aug 1, 2018, Cancer; see the journal abstract)
  • Perceptions of future health and cancer risk in adult survivors of childhood cancer: A report from the Childhood Cancer Survivor Study
    (August 2018, Cancer; see the journal abstract)
  • Insurance, chronic health conditions, and utilization of primary and specialty outpatient services: A Childhood Cancer Survivor Study report
    (October 2018, Journal of Cancer Survivorship; see the journal abstract)
  • Chronic health conditions and neurocognitive function in aging survivors of childhood cancer: a report from the Childhood Cancer Survivor Study
    (April 1, 2018, Journal of the National Cancer Institute; see the journal abstract)
  • Behavioral, social and emotional symptom comorbidities and profiles in adolescent survivors of childhood cancer: A report from the Childhood Cancer Survivor Study (CCSS)
    (October 1, 2016, Journal of Clinical Oncology; see the journal article)
  • Cognitive, behavior, and academic functioning in adolescent and young adult survivors of childhood acute lymphoblastic leukemia: A report from the Childhood Cancer Survivor Study
    (September 14, 2016, Lancet Psychiatry; see the journal article)