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Medical Care in Long-Term Survivors of Childhood Cancer: A Report From the Childhood Cancer Survivor Study

Paul C. Nathan, Mark L. Greenberg, Kirsten K. Ness, Melissa M. Hudson, Ann C. Mertens, Martin C. Mahoney, James G. Gurney, Sarah S. Donaldson, Wendy M. Leisenring, Leslie L. Robison, Kevin C. Oeffinger

From the Hospital for Sick Children, Toronto, Ontario, Canada; St Jude Children's Research Hospital, Memphis, TN; Emory University, Atlanta, GA; Roswell Park Cancer Institute, Buffalo, NY; University of Michigan, Ann Arbor, MI; Stanford Medical Center, Stanford, CA; Fred Hutchison Cancer Research Center, Seattle, WA; and Memorial Sloan-Kettering Cancer Center, New York, NY

Corresponding author: Paul Nathan, MD, MSc, the Hospital for Sick Children, Division of Haematology/Oncology, 555 University Ave, Toronto, ON M5G 1X8, Canada, e-mail: paul.nathan{at}sickkids.ca

Purpose To evaluate whether childhood cancer survivors receive regular medical care focused on the specific morbidities that can arise from their therapy.

Patients and Methods We conducted a cross-sectional survey of health care use in 8,522 participants in the Childhood Cancer Survivor Study, a multi-institutional cohort of childhood cancer survivors. We assessed medical visits in the preceding 2 years, whether these visits were related to the prior cancer, whether survivors received advice about how to reduce their long-term risks, and whether screening tests were discussed or ordered. Completion of echocardiograms and mammograms were assessed in patients at high risk for cardiomyopathy or breast cancer. We examined the relationship between demographics, treatment, health status, chronic medical conditions, and health care use.

Results Median age at cancer diagnosis was 6.8 years (range, 0 to 20.9 years) and at interview was 31.4 years (range, 17.5 to 54.1 years). Although 88.8% of survivors reported receiving some form of medical care, only 31.5% reported care that focused on their prior cancer (survivor-focused care), and 17.8% reported survivor-focused care that included advice about risk reduction or discussion or ordering of screening tests. Among survivors who received medical care, those who were black, older at interview, or uninsured were less likely to have received risk-based, survivor-focused care. Among patients at increased risk for cardiomyopathy or breast cancer, 511 (28.2%) of 1,810 and 169 (40.8%) of 414 had undergone a recommended echocardiogram or mammogram, respectively.

Conclusion Despite a significant risk of late effects after cancer therapy, the majority of childhood cancer survivors do not receive recommended risk-based care.

Supported by Grant No. U24-CA-55727 (L.L. Robison, principal investigator) from the United States Department of Health and Human Services, funding to the University of Minnesota from the Children's Cancer Research Fund, and funding to St Jude Children's Research Hospital from the American Lebanese Syrian Associated Charities.

Presented in part at the 43rd Annual Meeting of the American Society of Clinical Oncology, June 1-5, 2007, Chicago, IL.

Authors’ disclosures of potential conflicts of interest and author contributions are found at the end of this article.

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