Risk based care in survivors of childhood cancer: A report from the Childhood Cancer Survivor Study (CCSS)

Reviewer: Christine Hill, MD
Abramson Cancer Center of the University of Pennsylvania
Last Modified: June 3, 2007

Presenter: Nathan, P.C.
Presenter's Affiliation: The Hospital for Sick Children, Toronto, ON, Canada
Type of Session: Scientific


  • An estimated 270,000 childhood cancer survivors (CCS) were residing in the United Stages in 1997. As survival rates after childhood cancer continue to increase, this number is expected to grow: Currently, one in 640 adults aged 20-39 in the US is a childhood cancer survivor. This number is expected to increase to one in 450 by the year 210.
  • Of all adult survivors of childhood cancer, approximately 60% report having a chronic health condition, and 28% report having a severe or life-threatening medical condition (including second malignant neoplasm, cardiac disease, and joint replacement).
  • The Childhood Cancer Survivor Study (CCSS) is a multi-institutional study of patients who have survived at least 5 years after a childhood cancer diagnosis made between the years 1970 and 1986. Patients have been enrolled from 26 institutions across the US and Canada.
  • This study is a report from the CCSS, and was developed to assess the risk-based medical care delivered to childhood cancer survivors.

Materials and Methods

  • Eligible patients were members of the CCSS, who were contacted and asked to complete a survey regarding their medical care over the preceding two years.
  • Healthcare was classified as general (having nothing to do with the previous cancer diagnosis), cancer-related (meaning that the previous diagnosis was discussed and attended to), or risk-based (meaning that specific risks after childhood cancer were discussed and attended to).
  • A fourth category of optimal risk-based care was assessed in patients felt to have a significant risk of cardiac disease (> 300 mg/m2 anthracycline chemotherapy, or anthracycline chemotherapy in combination with chest radiation treatment) or breast cancer (females > age 27 who received chest radiation treatment).
  • Univariate and multivariate analyses were used to assess correlations between demographics and health care obtained.


  • 8,522 subjects responded to the health care survey of 14,370 patients who are part of the CCSS. 50% of responders were male, and 87% were Caucasian. The median age at cancer diagnosis was 6.8 years (range 0 - 21 years), and the median age at time of survey response was 31.4 years (range 17.5 - 54.1 years). 33% of original cancer diagnoses were childhood leukemia. The remainder of subjects had had diagnoses of lymphoma, brain tumors, Wilms tumor, and soft tissue or bone sarcoma.
  • 87% of subjects stated that they had received general medical care over the preceding two years. Additionally, 31% reported cancer-related care, and 12% reported basic risk-based care.
  • Of 1810 patients felt to be at increased risk for cardiac disease, 511 (28%) had had an echocardiogram in the preceding two years. Of 414 patients at increased risk for breast cancer, 169 (41%) had undergone mammography.
  • Patients were found to be more likely to obtain cancer-related care if they lived in Canada, perceived more disease/ treatment-related burden, or perceived poor health status.
  • Basic risk-based care was provided least often to patients without health insurance (odds ratio [OR] = 2.2, p < 0.001), males (OR = 1.03, p = 0.02), younger patients (OR = 1.03, p < 0.001), and those perceiving their overall health as good or excellent (OR = 1.37, p = 0.001). Patients residing in households with income <40,000 USD annually were also at increased risk for inadequate risk-based care.
  • Approximately 17% of patients reported receiving current follow-up care at a dedicated cancer center, and these patients were 50% more likely to undergo mammography and/ or echocardiography when indicated that patients cared for in a primary care setting.
  • Patients receiving either radiation treatment to the chest alone, or radiation in combination with anthracycline chemotherapy were more likely to receive optimal risk-based care than other patients (OR = 1.3 and 1.5, respectively); however, patients receiving anthracycline chemotherapy alone were not more likely to receive optimal risk-based care (OR = 0.9).

Author's Conclusions

  • Less than 1/3 of adult childhood cancer survivors receive adequate, risk-based care in the United States and Canada.
  • Mammography and echocardiography are used infrequently, even in patients at high risk for breast cancer and/or cardiac disease.
  • Males, uninsured patients, low-income patients, and patients with good or excellent health perception are at increased risk of receiving inadequate risk-based care after childhood cancer treatment.
  • Although still inadequate, risk-based care is provided accurately more commonly when adult survivors of childhood cancer are cared for at dedicated cancer centers.
  • The authors note that this study is limited by several factors: Firstly, all data is obtained via patient self-reporting. Additionally, patients in this study were treated for childhood cancer between 1970 and 1986, an era since which treatment paradigms have certainly changed. Finally, patients who are part of CCSS may be more aware of long-term risks after childhood cancer. Assessing this group may lead to overestimation of the risk-based care actually provided.

Clinical/Scientific Implications

  • As treatment continues to improve for childhood cancer, increasing numbers of adults in the United States and Canada are survivors of childhood cancer.
  • These patients require not only preventive and screening care recommended for the general population, but specific, risk-based care to properly assess for recurrence of disease as well as late-effects of cancer and its treatments.
  • The majority of adult childhood cancer survivors are not cared for at dedicated cancer centers. Direct and adequate communication from oncologists to both patients and other physicians is essential to facilitate adequate care being delivered to adult childhood cancer survivors. Documented survivor care plans to be provided to patients and their other physicians would certainly aid in this process. Additionally, provision of summarized documentation of the exact treatment received would likely assist patients and their doctors in designing care plans. Finally, childhood cancer survivors who may be specifically at risk for inadequate risk-based care should be identified when possible, and a direct plan of action put in place to provide scheduled care.