Financial Burden in Survivors of Childhood Cancer: A Report From the Childhood Cancer Survivor Study

Ryan D. Nipp, Ryan D. Nipp, Julia Rabin, Kelly A. Hyland, Karen Kuhlthau, Giselle K. Perez, and Elyse R. Park, Massachusetts General Hospital; Ryan D. Nipp, Karen Kuhlthau, Giselle K. Perez, and Elyse R. Park, Harvard Medical School, Boston, MA; Anne C. Kirchhoff, Douglas Fair, Huntsman Cancer Institute, Salt Lake City, UT; Leslie L. Robison and Gregory T. Armstrong, St Jude Children's Research Hospital, Memphis, TN; Paul C. Nathan, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada; Kevin C. Oeffinger, Memorial Sloan Kettering Cancer Center, New York, NY; and Wendy M. Leisenring, Fred Hutchinson Cancer Research Center, Seattle, WA.
Anne C. Kirchhoff, Ryan D. Nipp, Julia Rabin, Kelly A. Hyland, Karen Kuhlthau, Giselle K. Perez, and Elyse R. Park, Massachusetts General Hospital; Ryan D. Nipp, Karen Kuhlthau, Giselle K. Perez, and Elyse R. Park, Harvard Medical School, Boston, MA; Anne C. Kirchhoff, Douglas Fair, Huntsman Cancer Institute, Salt Lake City, UT; Leslie L. Robison and Gregory T. Armstrong, St Jude Children's Research Hospital, Memphis, TN; Paul C. Nathan, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada; Kevin C. Oeffinger, Memorial Sloan Kettering Cancer Center, New York, NY; and Wendy M. Leisenring, Fred Hutchinson Cancer Research Center, Seattle, WA.
Douglas Fair, Ryan D. Nipp, Julia Rabin, Kelly A. Hyland, Karen Kuhlthau, Giselle K. Perez, and Elyse R. Park, Massachusetts General Hospital; Ryan D. Nipp, Karen Kuhlthau, Giselle K. Perez, and Elyse R. Park, Harvard Medical School, Boston, MA; Anne C. Kirchhoff, Douglas Fair, Huntsman Cancer Institute, Salt Lake City, UT; Leslie L. Robison and Gregory T. Armstrong, St Jude Children's Research Hospital, Memphis, TN; Paul C. Nathan, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada; Kevin C. Oeffinger, Memorial Sloan Kettering Cancer Center, New York, NY; and Wendy M. Leisenring, Fred Hutchinson Cancer Research Center, Seattle, WA.Follow
Julia Rabin, Ryan D. Nipp, Julia Rabin, Kelly A. Hyland, Karen Kuhlthau, Giselle K. Perez, and Elyse R. Park, Massachusetts General Hospital; Ryan D. Nipp, Karen Kuhlthau, Giselle K. Perez, and Elyse R. Park, Harvard Medical School, Boston, MA; Anne C. Kirchhoff, Douglas Fair, Huntsman Cancer Institute, Salt Lake City, UT; Leslie L. Robison and Gregory T. Armstrong, St Jude Children's Research Hospital, Memphis, TN; Paul C. Nathan, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada; Kevin C. Oeffinger, Memorial Sloan Kettering Cancer Center, New York, NY; and Wendy M. Leisenring, Fred Hutchinson Cancer Research Center, Seattle, WA.
Kelly A. Hyland, Ryan D. Nipp, Julia Rabin, Kelly A. Hyland, Karen Kuhlthau, Giselle K. Perez, and Elyse R. Park, Massachusetts General Hospital; Ryan D. Nipp, Karen Kuhlthau, Giselle K. Perez, and Elyse R. Park, Harvard Medical School, Boston, MA; Anne C. Kirchhoff, Douglas Fair, Huntsman Cancer Institute, Salt Lake City, UT; Leslie L. Robison and Gregory T. Armstrong, St Jude Children's Research Hospital, Memphis, TN; Paul C. Nathan, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada; Kevin C. Oeffinger, Memorial Sloan Kettering Cancer Center, New York, NY; and Wendy M. Leisenring, Fred Hutchinson Cancer Research Center, Seattle, WA.
Karen Kuhlthau, Ryan D. Nipp, Julia Rabin, Kelly A. Hyland, Karen Kuhlthau, Giselle K. Perez, and Elyse R. Park, Massachusetts General Hospital; Ryan D. Nipp, Karen Kuhlthau, Giselle K. Perez, and Elyse R. Park, Harvard Medical School, Boston, MA; Anne C. Kirchhoff, Douglas Fair, Huntsman Cancer Institute, Salt Lake City, UT; Leslie L. Robison and Gregory T. Armstrong, St Jude Children's Research Hospital, Memphis, TN; Paul C. Nathan, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada; Kevin C. Oeffinger, Memorial Sloan Kettering Cancer Center, New York, NY; and Wendy M. Leisenring, Fred Hutchinson Cancer Research Center, Seattle, WA.
Giselle K. Perez, Ryan D. Nipp, Julia Rabin, Kelly A. Hyland, Karen Kuhlthau, Giselle K. Perez, and Elyse R. Park, Massachusetts General Hospital; Ryan D. Nipp, Karen Kuhlthau, Giselle K. Perez, and Elyse R. Park, Harvard Medical School, Boston, MA; Anne C. Kirchhoff, Douglas Fair, Huntsman Cancer Institute, Salt Lake City, UT; Leslie L. Robison and Gregory T. Armstrong, St Jude Children's Research Hospital, Memphis, TN; Paul C. Nathan, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada; Kevin C. Oeffinger, Memorial Sloan Kettering Cancer Center, New York, NY; and Wendy M. Leisenring, Fred Hutchinson Cancer Research Center, Seattle, WA.
Leslie L. Robison, Ryan D. Nipp, Julia Rabin, Kelly A. Hyland, Karen Kuhlthau, Giselle K. Perez, and Elyse R. Park, Massachusetts General Hospital; Ryan D. Nipp, Karen Kuhlthau, Giselle K. Perez, and Elyse R. Park, Harvard Medical School, Boston, MA; Anne C. Kirchhoff, Douglas Fair, Huntsman Cancer Institute, Salt Lake City, UT; Leslie L. Robison and Gregory T. Armstrong, St Jude Children's Research Hospital, Memphis, TN; Paul C. Nathan, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada; Kevin C. Oeffinger, Memorial Sloan Kettering Cancer Center, New York, NY; and Wendy M. Leisenring, Fred Hutchinson Cancer Research Center, Seattle, WA.
Gregory T. Armstrong, Ryan D. Nipp, Julia Rabin, Kelly A. Hyland, Karen Kuhlthau, Giselle K. Perez, and Elyse R. Park, Massachusetts General Hospital; Ryan D. Nipp, Karen Kuhlthau, Giselle K. Perez, and Elyse R. Park, Harvard Medical School, Boston, MA; Anne C. Kirchhoff, Douglas Fair, Huntsman Cancer Institute, Salt Lake City, UT; Leslie L. Robison and Gregory T. Armstrong, St Jude Children's Research Hospital, Memphis, TN; Paul C. Nathan, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada; Kevin C. Oeffinger, Memorial Sloan Kettering Cancer Center, New York, NY; and Wendy M. Leisenring, Fred Hutchinson Cancer Research Center, Seattle, WA.Follow
Paul C. Nathan, Ryan D. Nipp, Julia Rabin, Kelly A. Hyland, Karen Kuhlthau, Giselle K. Perez, and Elyse R. Park, Massachusetts General Hospital; Ryan D. Nipp, Karen Kuhlthau, Giselle K. Perez, and Elyse R. Park, Harvard Medical School, Boston, MA; Anne C. Kirchhoff, Douglas Fair, Huntsman Cancer Institute, Salt Lake City, UT; Leslie L. Robison and Gregory T. Armstrong, St Jude Children's Research Hospital, Memphis, TN; Paul C. Nathan, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada; Kevin C. Oeffinger, Memorial Sloan Kettering Cancer Center, New York, NY; and Wendy M. Leisenring, Fred Hutchinson Cancer Research Center, Seattle, WA.
Kevin C. Oeffinger, Ryan D. Nipp, Julia Rabin, Kelly A. Hyland, Karen Kuhlthau, Giselle K. Perez, and Elyse R. Park, Massachusetts General Hospital; Ryan D. Nipp, Karen Kuhlthau, Giselle K. Perez, and Elyse R. Park, Harvard Medical School, Boston, MA; Anne C. Kirchhoff, Douglas Fair, Huntsman Cancer Institute, Salt Lake City, UT; Leslie L. Robison and Gregory T. Armstrong, St Jude Children's Research Hospital, Memphis, TN; Paul C. Nathan, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada; Kevin C. Oeffinger, Memorial Sloan Kettering Cancer Center, New York, NY; and Wendy M. Leisenring, Fred Hutchinson Cancer Research Center, Seattle, WA.
Wendy M. Leisenring, Ryan D. Nipp, Julia Rabin, Kelly A. Hyland, Karen Kuhlthau, Giselle K. Perez, and Elyse R. Park, Massachusetts General Hospital; Ryan D. Nipp, Karen Kuhlthau, Giselle K. Perez, and Elyse R. Park, Harvard Medical School, Boston, MA; Anne C. Kirchhoff, Douglas Fair, Huntsman Cancer Institute, Salt Lake City, UT; Leslie L. Robison and Gregory T. Armstrong, St Jude Children's Research Hospital, Memphis, TN; Paul C. Nathan, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada; Kevin C. Oeffinger, Memorial Sloan Kettering Cancer Center, New York, NY; and Wendy M. Leisenring, Fred Hutchinson Cancer Research Center, Seattle, WA.
Elyse R. Park, Ryan D. Nipp, Julia Rabin, Kelly A. Hyland, Karen Kuhlthau, Giselle K. Perez, and Elyse R. Park, Massachusetts General Hospital; Ryan D. Nipp, Karen Kuhlthau, Giselle K. Perez, and Elyse R. Park, Harvard Medical School, Boston, MA; Anne C. Kirchhoff, Douglas Fair, Huntsman Cancer Institute, Salt Lake City, UT; Leslie L. Robison and Gregory T. Armstrong, St Jude Children's Research Hospital, Memphis, TN; Paul C. Nathan, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada; Kevin C. Oeffinger, Memorial Sloan Kettering Cancer Center, New York, NY; and Wendy M. Leisenring, Fred Hutchinson Cancer Research Center, Seattle, WA.

Abstract

Purpose Survivors of childhood cancer may experience financial burden as a result of health care costs, particularly because these patients often require long-term medical care. We sought to evaluate the prevalence of financial burden and identify associations between a higher percentage of income spent on out-of-pocket medical costs (≥ 10% of annual income) and issues related to financial burden (jeopardizing care or changing lifestyle) among survivors of childhood cancer and a sibling comparison group. Methods Between May 2011 and April 2012, we surveyed an age-stratified, random sample of survivors of childhood cancer and a sibling comparison group who were enrolled in the Childhood Cancer Survivor Study. Participants reported their household income, out-of-pocket medical costs, and issues related to financial burden (questions were adapted from national surveys on financial burden). Logistic regression identified associations between participant characteristics, a higher percentage of income spent on out-of-pocket medical costs, and financial burden, adjusting for potential confounders. Results Among 580 survivors of childhood cancer and 173 siblings, survivors of childhood cancer were more likely to have out-of-pocket medical costs ≥ 10% of annual income (10.0% v 2.9%; P < .001). Characteristics of the survivors of childhood cancer that were associated with a higher percentage of income spent on out-of-pocket costs included hospitalization in the past year (odds ratio [OR], 2.3; 95% CI, 1.1 to 4.9) and household income < $50,000 (OR, 5.5; 95% CI, 2.4 to 12.8). Among survivors of childhood cancer, a higher percentage of income spent on out-of-pocket medical costs was significantly associated with problems paying medical bills (OR, 8.9; 95% CI, 4.4 to 18.0); deferring care for a medical problem (OR, 3.0; 95% CI, 1.6 to 5.9); skipping a test, treatment, or follow-up (OR, 2.1; 95% CI, 1.1 to 4.0); and thoughts of filing for bankruptcy (OR, 6.6; 95% CI, 3.0 to 14.3). Conclusion Survivors of childhood cancer are more likely to report spending a higher percentage of their income on out-of-pocket medical costs, which may influence their health-seeking behavior and potentially affect health outcomes. Our findings highlight the need to address financial burden in this population with long-term health care needs.

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Journal of clinical oncology : official journal of the American Society of Clinical Oncology

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