title: Childhood Cancer Survivor Study participants' perceptions and understanding of the Affordable Care Act.
abstract: OBJECTIVE
  The Patient Protection and Affordable Care Act (ACA) established provisions intended to increase access to affordable health insurance and thus increase access to medical care and long-term surveillance for populations with pre-existing conditions. However, childhood cancer survivors' coverage priorities and familiarity with the ACA are unknown.
  
  
  METHODS
  Between May 2011 and April 2012, we surveyed a randomly selected, age-stratified sample of 698 survivors and 210 siblings from the Childhood Cancer Survivor Study.
  
  
  RESULTS
  Overall, 89.8% of survivors and 92.1% of siblings were insured. Many features of insurance coverage that survivors considered "very important" are addressed by the ACA, including increased availability of primary care (94.6%), no waiting period before coverage initiation (79.0%), and affordable premiums (88.1%). Survivors were more likely than siblings to deem primary care physician coverage and choice, protections from costs due to pre-existing conditions, and no start-up period as "very important" (P < .05 for all). Only 27.3% of survivors and 26.2% of siblings reported familiarity with the ACA (12.1% of uninsured v 29.0% of insured survivors; odds ratio, 2.86; 95% CI, 1.28 to 6.36). Only 21.3% of survivors and 18.9% of siblings believed the ACA would make it more likely that they would get quality coverage. Survivors' and siblings' concerns about the ACA included increased costs, decreased access to and quality of care, and negative impact on employers and employees.
  
  
  CONCLUSIONS
  Although survivors' coverage preferences match many ACA provisions, survivors, particularly uninsured survivors, were not familiar with the ACA. Education and assistance, perhaps through cancer survivor navigation, are critically needed to ensure that survivors access coverage and benefits.
authors: Elyse R. Park, Giselle K. Perez, Karen Donelan, Mariel Franklin, Kelly A. Hyland, and Karen A. Kuhlthau, Massachusetts General Hospital; Joel S. Weissman, Brigham and Women's Hospital; Lisa R. Diller and Christopher J. Recklitis, Dana-Farber Cancer Institute, Boston, MA; Anne C. Kirchhoff, Huntsman Cancer Institute, Salt Lake City, UT; Wendy Leisenring, Fred Hutchinson Cancer Research Center, Seattle, WA; Ann C. Mertens, Emory University School of Medicine, Atlanta, GA; James D. Reschovsky, Mathematica Policy Research, Washington, DC; and Gregory T. Armstrong and Leslie L. Robison, St Jude Children's Research Hospital, Memphis, TN. epark@partners.org.
authors: Elyse R
authors: ER
authors: Park
authors: Elyse R. Park, Giselle K. Perez, Karen Donelan, Mariel Franklin, Kelly A. Hyland, and Karen A. Kuhlthau, Massachusetts General Hospital; Joel S. Weissman, Brigham and Women's Hospital; Lisa R. Diller and Christopher J. Recklitis, Dana-Farber Cancer Institute, Boston, MA; Anne C. Kirchhoff, Huntsman Cancer Institute, Salt Lake City, UT; Wendy Leisenring, Fred Hutchinson Cancer Research Center, Seattle, WA; Ann C. Mertens, Emory University School of Medicine, Atlanta, GA; James D. Reschovsky, Mathematica Policy Research, Washington, DC; and Gregory T. Armstrong and Leslie L. Robison, St Jude Children's Research Hospital, Memphis, TN.
authors: Anne C
authors: AC
authors: Kirchhoff
authors: Elyse R. Park, Giselle K. Perez, Karen Donelan, Mariel Franklin, Kelly A. Hyland, and Karen A. Kuhlthau, Massachusetts General Hospital; Joel S. Weissman, Brigham and Women's Hospital; Lisa R. Diller and Christopher J. Recklitis, Dana-Farber Cancer Institute, Boston, MA; Anne C. Kirchhoff, Huntsman Cancer Institute, Salt Lake City, UT; Wendy Leisenring, Fred Hutchinson Cancer Research Center, Seattle, WA; Ann C. Mertens, Emory University School of Medicine, Atlanta, GA; James D. Reschovsky, Mathematica Policy Research, Washington, DC; and Gregory T. Armstrong and Leslie L. Robison, St Jude Children's Research Hospital, Memphis, TN.
authors: Giselle K
authors: GK
authors: Perez
authors: Elyse R. Park, Giselle K. Perez, Karen Donelan, Mariel Franklin, Kelly A. Hyland, and Karen A. Kuhlthau, Massachusetts General Hospital; Joel S. Weissman, Brigham and Women's Hospital; Lisa R. Diller and Christopher J. Recklitis, Dana-Farber Cancer Institute, Boston, MA; Anne C. Kirchhoff, Huntsman Cancer Institute, Salt Lake City, UT; Wendy Leisenring, Fred Hutchinson Cancer Research Center, Seattle, WA; Ann C. Mertens, Emory University School of Medicine, Atlanta, GA; James D. Reschovsky, Mathematica Policy Research, Washington, DC; and Gregory T. Armstrong and Leslie L. Robison, St Jude Children's Research Hospital, Memphis, TN.
authors: Wendy
authors: W
authors: Leisenring
authors: Elyse R. Park, Giselle K. Perez, Karen Donelan, Mariel Franklin, Kelly A. Hyland, and Karen A. Kuhlthau, Massachusetts General Hospital; Joel S. Weissman, Brigham and Women's Hospital; Lisa R. Diller and Christopher J. Recklitis, Dana-Farber Cancer Institute, Boston, MA; Anne C. Kirchhoff, Huntsman Cancer Institute, Salt Lake City, UT; Wendy Leisenring, Fred Hutchinson Cancer Research Center, Seattle, WA; Ann C. Mertens, Emory University School of Medicine, Atlanta, GA; James D. Reschovsky, Mathematica Policy Research, Washington, DC; and Gregory T. Armstrong and Leslie L. Robison, St Jude Children's Research Hospital, Memphis, TN.
authors: Joel S
authors: JS
authors: Weissman
authors: Elyse R. Park, Giselle K. Perez, Karen Donelan, Mariel Franklin, Kelly A. Hyland, and Karen A. Kuhlthau, Massachusetts General Hospital; Joel S. Weissman, Brigham and Women's Hospital; Lisa R. Diller and Christopher J. Recklitis, Dana-Farber Cancer Institute, Boston, MA; Anne C. Kirchhoff, Huntsman Cancer Institute, Salt Lake City, UT; Wendy Leisenring, Fred Hutchinson Cancer Research Center, Seattle, WA; Ann C. Mertens, Emory University School of Medicine, Atlanta, GA; James D. Reschovsky, Mathematica Policy Research, Washington, DC; and Gregory T. Armstrong and Leslie L. Robison, St Jude Children's Research Hospital, Memphis, TN.
authors: Karen
authors: K
authors: Donelan
authors: Elyse R. Park, Giselle K. Perez, Karen Donelan, Mariel Franklin, Kelly A. Hyland, and Karen A. Kuhlthau, Massachusetts General Hospital; Joel S. Weissman, Brigham and Women's Hospital; Lisa R. Diller and Christopher J. Recklitis, Dana-Farber Cancer Institute, Boston, MA; Anne C. Kirchhoff, Huntsman Cancer Institute, Salt Lake City, UT; Wendy Leisenring, Fred Hutchinson Cancer Research Center, Seattle, WA; Ann C. Mertens, Emory University School of Medicine, Atlanta, GA; James D. Reschovsky, Mathematica Policy Research, Washington, DC; and Gregory T. Armstrong and Leslie L. Robison, St Jude Children's Research Hospital, Memphis, TN.
authors: Ann C
authors: AC
authors: Mertens
authors: Elyse R. Park, Giselle K. Perez, Karen Donelan, Mariel Franklin, Kelly A. Hyland, and Karen A. Kuhlthau, Massachusetts General Hospital; Joel S. Weissman, Brigham and Women's Hospital; Lisa R. Diller and Christopher J. Recklitis, Dana-Farber Cancer Institute, Boston, MA; Anne C. Kirchhoff, Huntsman Cancer Institute, Salt Lake City, UT; Wendy Leisenring, Fred Hutchinson Cancer Research Center, Seattle, WA; Ann C. Mertens, Emory University School of Medicine, Atlanta, GA; James D. Reschovsky, Mathematica Policy Research, Washington, DC; and Gregory T. Armstrong and Leslie L. Robison, St Jude Children's Research Hospital, Memphis, TN.
authors: James D
authors: JD
authors: Reschovsky
authors: Elyse R. Park, Giselle K. Perez, Karen Donelan, Mariel Franklin, Kelly A. Hyland, and Karen A. Kuhlthau, Massachusetts General Hospital; Joel S. Weissman, Brigham and Women's Hospital; Lisa R. Diller and Christopher J. Recklitis, Dana-Farber Cancer Institute, Boston, MA; Anne C. Kirchhoff, Huntsman Cancer Institute, Salt Lake City, UT; Wendy Leisenring, Fred Hutchinson Cancer Research Center, Seattle, WA; Ann C. Mertens, Emory University School of Medicine, Atlanta, GA; James D. Reschovsky, Mathematica Policy Research, Washington, DC; and Gregory T. Armstrong and Leslie L. Robison, St Jude Children's Research Hospital, Memphis, TN.
authors: Gregory T
authors: GT
authors: Armstrong
authors: Elyse R. Park, Giselle K. Perez, Karen Donelan, Mariel Franklin, Kelly A. Hyland, and Karen A. Kuhlthau, Massachusetts General Hospital; Joel S. Weissman, Brigham and Women's Hospital; Lisa R. Diller and Christopher J. Recklitis, Dana-Farber Cancer Institute, Boston, MA; Anne C. Kirchhoff, Huntsman Cancer Institute, Salt Lake City, UT; Wendy Leisenring, Fred Hutchinson Cancer Research Center, Seattle, WA; Ann C. Mertens, Emory University School of Medicine, Atlanta, GA; James D. Reschovsky, Mathematica Policy Research, Washington, DC; and Gregory T. Armstrong and Leslie L. Robison, St Jude Children's Research Hospital, Memphis, TN.
authors: Leslie L
authors: LL
authors: Robison
authors: Elyse R. Park, Giselle K. Perez, Karen Donelan, Mariel Franklin, Kelly A. Hyland, and Karen A. Kuhlthau, Massachusetts General Hospital; Joel S. Weissman, Brigham and Women's Hospital; Lisa R. Diller and Christopher J. Recklitis, Dana-Farber Cancer Institute, Boston, MA; Anne C. Kirchhoff, Huntsman Cancer Institute, Salt Lake City, UT; Wendy Leisenring, Fred Hutchinson Cancer Research Center, Seattle, WA; Ann C. Mertens, Emory University School of Medicine, Atlanta, GA; James D. Reschovsky, Mathematica Policy Research, Washington, DC; and Gregory T. Armstrong and Leslie L. Robison, St Jude Children's Research Hospital, Memphis, TN.
authors: Mariel
authors: M
authors: Franklin
authors: Elyse R. Park, Giselle K. Perez, Karen Donelan, Mariel Franklin, Kelly A. Hyland, and Karen A. Kuhlthau, Massachusetts General Hospital; Joel S. Weissman, Brigham and Women's Hospital; Lisa R. Diller and Christopher J. Recklitis, Dana-Farber Cancer Institute, Boston, MA; Anne C. Kirchhoff, Huntsman Cancer Institute, Salt Lake City, UT; Wendy Leisenring, Fred Hutchinson Cancer Research Center, Seattle, WA; Ann C. Mertens, Emory University School of Medicine, Atlanta, GA; James D. Reschovsky, Mathematica Policy Research, Washington, DC; and Gregory T. Armstrong and Leslie L. Robison, St Jude Children's Research Hospital, Memphis, TN.
authors: Kelly A
authors: KA
authors: Hyland
authors: Elyse R. Park, Giselle K. Perez, Karen Donelan, Mariel Franklin, Kelly A. Hyland, and Karen A. Kuhlthau, Massachusetts General Hospital; Joel S. Weissman, Brigham and Women's Hospital; Lisa R. Diller and Christopher J. Recklitis, Dana-Farber Cancer Institute, Boston, MA; Anne C. Kirchhoff, Huntsman Cancer Institute, Salt Lake City, UT; Wendy Leisenring, Fred Hutchinson Cancer Research Center, Seattle, WA; Ann C. Mertens, Emory University School of Medicine, Atlanta, GA; James D. Reschovsky, Mathematica Policy Research, Washington, DC; and Gregory T. Armstrong and Leslie L. Robison, St Jude Children's Research Hospital, Memphis, TN.
authors: Lisa R
authors: LR
authors: Diller
authors: Elyse R. Park, Giselle K. Perez, Karen Donelan, Mariel Franklin, Kelly A. Hyland, and Karen A. Kuhlthau, Massachusetts General Hospital; Joel S. Weissman, Brigham and Women's Hospital; Lisa R. Diller and Christopher J. Recklitis, Dana-Farber Cancer Institute, Boston, MA; Anne C. Kirchhoff, Huntsman Cancer Institute, Salt Lake City, UT; Wendy Leisenring, Fred Hutchinson Cancer Research Center, Seattle, WA; Ann C. Mertens, Emory University School of Medicine, Atlanta, GA; James D. Reschovsky, Mathematica Policy Research, Washington, DC; and Gregory T. Armstrong and Leslie L. Robison, St Jude Children's Research Hospital, Memphis, TN.
authors: Christopher J
authors: CJ
authors: Recklitis
authors: Elyse R. Park, Giselle K. Perez, Karen Donelan, Mariel Franklin, Kelly A. Hyland, and Karen A. Kuhlthau, Massachusetts General Hospital; Joel S. Weissman, Brigham and Women's Hospital; Lisa R. Diller and Christopher J. Recklitis, Dana-Farber Cancer Institute, Boston, MA; Anne C. Kirchhoff, Huntsman Cancer Institute, Salt Lake City, UT; Wendy Leisenring, Fred Hutchinson Cancer Research Center, Seattle, WA; Ann C. Mertens, Emory University School of Medicine, Atlanta, GA; James D. Reschovsky, Mathematica Policy Research, Washington, DC; and Gregory T. Armstrong and Leslie L. Robison, St Jude Children's Research Hospital, Memphis, TN.
authors: Karen A
authors: KA
authors: Kuhlthau
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D015897:Comorbidity; D032882:Comprehension; D005260:Female; D006301:Health Services Needs and Demand / Q000191:economics; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D019458:Insurance Coverage / Q000331:legislation & jurisprudence*; D007348:Insurance, Health / Q000331:legislation & jurisprudence*; D008297:Male; D017057:Medically Uninsured; D008875:Middle Aged; D009369:Neoplasms / Q000175:diagnosis / Q000628:therapy; D016609:Neoplasms, Second Primary / Q000175:diagnosis / Q000628:therapy; D058991:Patient Protection and Affordable Care Act; D012008:Recurrence; D012938:Social Perception; D017741:Survivors / Q000523:psychology / Q000706:statistics & numerical data; D014481:United States; D055815:Young Adult
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