Childhood Cancer Survivor Study: An Overview

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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 2014, at least 419,000 of these survivors were first diagnosed when they were under the age of 20. Advances in cancer treatment mean that today more than 80 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, and smoking cessation). CCSS-based research provided the foundation for all of these studies. Intervention studies are ongoing for sun protection among survivors at highest risk for radiation-associated skin cancer, and to reduce obesity in survivors of acute lymphoblastic leukemia. A third intervention trial to reduce the underdiagnosis and undertreatment of traditional cardiovascular risk factors—including hypertension, diabetes mellitus, and dyslipidemia—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

  • 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)
  • Survivors of childhood cancer in the United States: Prevalence and burden of morbidity
    (April 2015, Cancer Epidemiology, Biomarkers & Prevention; see the journal article)

Subsequent Cancers and Other Medical Concerns

  • Financial burden in survivors of childhood cancer: A report from the Childhood Cancer Survivor Study
    (Aug. 17, 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 abstract)
  • 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)
  • Equivalence ratio for daunorubicin to doxorubicin in relation to late heart failure in childhood cancer survivors
    (Nov. 10, 2015, Journal of Clinical Oncology; see the journal article)
  • Risk of subsequent neoplasms during the fifth and sixth decades of life in the Childhood Cancer Survivor Study cohort
    (Nov. 1, 2015, Journal of Clinical Oncology; see the journal article)
  • Estimating the risk for late effects of therapy in children newly diagnosed with standard risk acute lymphoblastic leukaemia using an historical cohort: A report from the Childhood Cancer Survivor Study
    (Jul. 2014, Lancet Oncology; see the journal article)
  • Aging and risk of severe, disabling, life-threatening, and fatal events in the Childhood Cancer Survivor Study
    (Apr. 20, 2014, Journal of Clinical Oncology; see the journal article)
  • Modifiable risk factors and major cardiac events among adult survivors of childhood cancer
    (Oct. 10, 2013, Journal of Clinical Oncology; see the journal article)
  • Radiation, atherosclerotic risk factors, and stroke risk in survivors of pediatric cancer: A report from the Childhood Cancer Survivor Study
    (Jul. 15, 2013, International Journal of Radiation Oncology Biology Physics; see the journal article)
  • Absolute risk prediction of second primary thyroid cancer among 5-year survivors of childhood cancer
    (Jan. 1, 2013, Journal of Clinical Oncology; see the journal article)
  • Radiation-related risk of basal cell carcinoma: A Report from the Childhood Cancer Survivor Study
    (August 2012, Journal of the National Cancer Institute; see the journal article)
  • Fractures among long-term survivors of childhood cancer: A report from the Childhood Cancer Survivor Study
    (Dec. 1, 2012, Cancer; see the journal article)
  • Chemotherapy and thyroid cancer risk: A report from the Childhood Cancer Survivor Study
    (Jan. 2012, Cancer Epidemiology, Biomarkers & Prevention; see the journal article)

Reproductive Complications

  • 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)
  • Infertility, infertility treatment, and achievement of pregnancy in female survivors of childhood cancer: A report from the Childhood Cancer Survivor Study cohort
    (Aug. 2013, Lancet Oncology; see the journal article)
  • Congenital anomalies in the children of cancer survivors: A report from the Childhood Cancer Survivor Study
    (Jan. 20, 2012, Journal of Clinical Oncology; see the journal article)

Psychosocial Issues

  • Behavioral, social and emotional symptom comorbidities and profiles in adolescent survivors of childhood cancer: A report from the Childhood Cancer Survivor Study (CCSS)
    (July 18, 2016, published online in the Journal of Clinical Oncology; see the journal abstract)
  • Psychosocial and neurocognitive outcomes in adult survivors of adolescent and early young adult cancer: A report from the Childhood Cancer Survivor Study
    (Aug. 10, 2015, Journal of Clinical Oncology; see the journal article)
  • Psychosexual functioning among adult female survivors of childhood cancer: A report from the Childhood Cancer Survivor Study
    (Oct. 1, 2014, Journal of Clinical Oncology; see the journal article)
  • Longitudinal patterns of psychological distress in adult survivors of childhood cancer
    (Sept. 3, 2013, British Journal of Cancer; see the journal article)