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The Childhood Cancer Survivor Study: An Overview

As of January 2014, it is estimated that there are 14.5 million cancer survivors in the United States. As of 2011, at least 388,501 of these survivors were first diagnosed when they were under the age of 21. 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 as a result 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 24,000 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 15,000 survivors diagnosed between 1987 and 1999 and about 4,000 of their siblings were also recruited for the study.

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. An intervention study is ongoing for sun protection among survivors at highest risk for radiation-associated skin cancer.

Researchers who have studied the CCSS data so far have identified a number of potential late effects, including premature menopause, stroke, and second 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.

Second Cancers and Other Medical Concerns

  • Risk of late effects of treatment in children newly diagnosed with standard-risk acute lymphoblastic leukaemia: a report from the Childhood Cancer Survivor Study cohort
    (Jul. 2014, Lancet Oncology; see the journal abstract)
  • 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, published online in the 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, published online in the Journal of Clinical Oncology; see the journal article)
  • Radiation-related risk of basal cell carcinoma: A Report from the Childhood Cancer Survivor Study
    (Jul. 25, 2012, published online in 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
    (May 17, 2012, published online in 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)
  • Long-term outcomes in survivors of neuroblastoma
    (Aug. 19, 2009, Journal of the National Cancer Institute; see the journal article)

Reproductive Complications

  • 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)
  • Stillbirth and neonatal death in relation to radiation exposure before conception: a retrospective cohort study
    (Aug. 21, 2010, Lancet; see the journal article)
  • Ovarian failure and reproductive outcomes after childhood cancer treatment
    (May 10, 2010, Journal of Clinical Oncology; see the journal article)
  • Fertility of male survivors of childhood cancer
    (Jan. 10, 2010, Journal of Clinical Oncology; see the journal article)
  • Fertility of female survivors of childhood cancer
    (Jun. 1, 2009, Journal of Clinical Oncology; see the journal article)

Psychosocial Issues

  • 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 abstract)
  • Longitudinal patterns of psychological distress in adult survivors of childhood cancer
    (Sept. 3, 2013, British Journal of Cancer; see the journal article)
  • Psychological status in childhood cancer survivors
    (May 10, 2009, Journal of Clinical Oncology; see the journal article)

Health-Related Behaviors

  • Screening and surveillance for second malignant neoplasms in adult survivors of childhood cancer
    (Oct. 5, 2010, Annals of Internal Medicine; see the journal article)
  • Long-term smoking cessation outcomes among childhood cancer survivors
    (Jan. 1, 2009, Journal of Clinical Oncology; see the journal article)

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  • Updated: April 21, 2015