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Table 1.  Sociodemographic and Treatment Characteristics and Health Insurance Coverage and Quality Among Survivors of Childhood Cancer and Siblingsa
Sociodemographic and Treatment Characteristics and Health Insurance Coverage and Quality Among Survivors of Childhood Cancer and Siblingsa
Table 2.  Prevalence and Multivariable Odds Ratios (ORs) of Health Care Costs, Worry, and Effects on Health Care Utilization
Prevalence and Multivariable Odds Ratios (ORs) of Health Care Costs, Worry, and Effects on Health Care Utilization
1.
Howlader  N, Noone  A, Krapcho  M,  et al. Cancer Statistics Review, 1975-2011. Previous Version. SEER Cancer Statistics Review. https://seer.cancer.gov/archive/csr/1975_2011/. Accessed May 3, 2017.
2.
Park  ER, Li  FP, Liu  Y,  et al; Childhood Cancer Survivor Study.  Health insurance coverage in survivors of childhood cancer: the Childhood Cancer Survivor Study.  J Clin Oncol. 2005;23(36):9187-9197. doi:10.1200/JCO.2005.01.7418PubMedGoogle ScholarCrossref
3.
Public Law 111-148, Patient Protection and Affordable Care March 23, 2010. https://www.gpo.gov/fdsys/pkg/PLAW-111publ148/pdf/PLAW-111publ148.pdf. Accessed May 3, 2017.
4.
Park  ER, Kirchhoff  AC, Perez  GK,  et al.  Childhood Cancer Survivor Study participants’ perceptions and understanding of the Affordable Care Act.  J Clin Oncol. 2015;33(7):764-772. doi:10.1200/JCO.2014.58.0993PubMedGoogle ScholarCrossref
5.
Park  ER, Kirchhoff  AC, Zallen  JP,  et al.  Childhood Cancer Survivor Study participants’ perceptions and knowledge of health insurance coverage: implications for the Affordable Care Act.  J Cancer Surviv. 2012;6(3):251-259. doi:10.1007/s11764-012-0225-yPubMedGoogle ScholarCrossref
6.
Leopold  C, Park  ER, Nekhlyudov  L.  The impact of the affordable care act on cancer survivorship.  Cancer J. 2017;23(3):181-189.PubMedGoogle ScholarCrossref
Research Letter
Health Care Reform
December 2017

Assessing Health Insurance Coverage Characteristics and Impact on Health Care Cost, Worry, and Access: A Report From the Childhood Cancer Survivor Study

Author Affiliations
  • 1Mongan Institute for Health Policy Center, Massachusetts General Hospital, Boston
  • 2Cancer Center Survivorship Program, Massachusetts General Hospital Cancer Center, Boston
  • 3Division of Hematology and Oncology, Massachusetts General Hospital Cancer Center, Boston
  • 4Huntsman Cancer Institute and the Department of Pediatrics, University of Utah, Salt Lake City
  • 5Fred Hutchinson Cancer Research Center, Seattle, Washington
  • 6Department of Epidemiology and Cancer Control, St Jude Children's Research Hospital, Memphis, Tennessee
  • 7Department of Pediatrics, Harvard Medical School, Boston
  • 8Division of General Academic Pediatrics in the Department of Pediatrics, Massachusetts General Hospital, Boston
JAMA Intern Med. 2017;177(12):1855-1858. doi:10.1001/jamainternmed.2017.5047

Advances in treatment have resulted in a growing population of more than 375 000 adult survivors of childhood cancer who are at high risk for long-term, treatment-related morbidity requiring ongoing medical surveillance.1 Previous research with the multi-institutional Childhood Cancer Survivor Study (CCSS) revealed that childhood survivors were vulnerable to being uninsured and may be underinsured (ie, inadequate coverage without financial protection).2

Methods

One year after the enactment of the Affordable Care Act provisions,3 we assessed a randomly selected, age-stratified sample of 698 CCSS survivors and 210 siblings4 and assessed insurance coverage characteristics and the impact of underinsurance (cost, worry about health care costs, and the effects of worry on health care access). t Tests and χ2 analyses compared responses of survivors vs siblings and insured vs uninsured survivors. Multivariable logistic regressions compared survivors vs siblings and insured vs uninsured survivors on health care costs, worry, and effects on health care access, adjusting for age, sex, marital status, and chronic health conditions.

All procedures were approved by the institutional review boards of St Jude Children’s Research Hospital and the Massachusetts General Hospital/Partners HealthCare. All study participants had consented prior to be a part of the CCSS cohort at St Jude Children’s Research Hospital.

Results

Among the 89.8% (698) and 92.2% (210) of insured survivors and siblings, respectively (Table 1), survivors had lower rates of employer-sponsored coverage, higher rates of Medicaid, greater difficulty obtaining coverage, and higher rates of being denied coverage; only 14.9% and 11.5%, respectively, rated their health insurance coverage as “fair to poor.” However, survivors reported higher annual out-of-pocket costs than siblings (mean, $2372 vs $1568; P < .01); insured survivors reported higher out-of-pocket costs than uninsured survivors (mean, $2487 vs $1293; P = .003) (data not shown). Survivors were more likely than siblings to borrow money because of medical expenses (odds ratio [OR], 1.84; 95% CI, 1.03-3.28), worry that they would not be able to get a needed medical procedure (OR, 1.80; 95% CI, 1.09-2.98), and not fill a prescription (OR, 1.74; 95% CI, 1.01-3.04) (Table 2). Compared with insured survivors, uninsured survivors were more likely than insured survivors to borrow money because of medical expenses (OR, 3.11; 95% CI, 1.67-5.79), worry about not being able to pay medical bills (OR, 6.21; 95% CI, 3.27-11.77), not have a primary care provider (OR, 12.17; 95% CI, 6.16-24.01), postpone preventive care (OR, 8.28; 95% CI, 4.41-15.55), not get a needed medical test or follow-up (OR, 8.53; 95% CI, 4.59-15.88), and not fill a prescription (30.9% vs 14.1%; OR, 3.31; 95% CI, 1.64-6.69).

Discussion

During the early stages of the ACA rollout, disparities in many characteristics of childhood cancer survivors’ coverage existed; although survivor-sibling differences were not seen in rates of coverage, survivors had higher out-of-pocket expenses, despite lower household incomes. Childhood survivors reported satisfaction with their insurance coverage despite high costs, which reflects the sentiment gleaned from qualitative work5 suggesting that childhood survivors may not be selective about their coverage characteristics and cost. In a related finding, more survivors reported not filling a prescription due to financial concerns, despite survivors more frequently reporting that “most” prescription medications were covered by their plan. Uninsured survivors had increased worry about costs that translated into skipping or postponing medical tests or clinic visits. In addition, uninsured survivors reported paying less out-of-pocket compared with insured survivors. This suggests that uninsured survivors likely are avoiding needed health care5; indeed, approximately half did not have a primary care provider and forewent treatment for a medical problem.

The generalizability of these findings may be limited, albeit the participant sample is reflective of the overall CCSS population. These data are a benchmark for future research assessing the effects of the rollout of ACA provisions and potential changes in insurance policy.6 This work should explore whether coverage increases survivors’ access to services yet increases uncovered service costs and explore whether health insurance premiums and cost-sharing increase, which could widen the out-of pocket cost disparities found. Childhood survivors should be counseled on available programs and services to facilitate obtaining affordable coverage and utilize needed health care.

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Article Information

Corresponding Author: Elyse R. Park, PhD, MPH, Massachusetts General Hospital, 50 Staniford St, Ste 906, Boston, MA 02114 (epark@mgh.harvard.edu).

Accepted for Publication: July 31, 2017.

Published Online: September 25, 2017. doi:10.1001/jamainternmed.2017.5047

Author Contributions: Dr Park had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Study concept and design: All authors.

Acquisition, analysis, or interpretation of data: All authors.

Drafting of the manuscript: Park, Kirchhoff, Nipp.

Critical revision of the manuscript for important intellectual content: Park, Nipp, Donelan, Leisenring, Armstrong, Kuhlthau.

Statistical analysis: Kirchhoff, Nipp, Donelan, Leisenring.

Obtained funding: Park, Armstrong, Kuhlthau.

Administrative, technical, or material support: Park, Donelan, Leisenring, Armstrong, Kuhlthau.

Study supervision: Park, Nipp, Kuhlthau.

Conflict of Interest Disclosures: None reported.

Funding/Support: This study was supported by the LIVESTRONG Foundation (Dr Park), National Cancer Institute (U24 CA55727, Dr Armstrong, principal investigator and CA21765, Dr Roberts, principal investigator). Support to St Jude Children’s Research Hospital is also provided by the American Lebanese-Syrian Associated Charities (ALSAC).

Role of the Funder/Sponsor: The funding sources had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

Additional Contributions: We thank the following collaborators for their valued contributions to this work: Giselle K. Perez, PhD, and Julia T. Rabin, BA, Mongan Institute for Health Policy Center, Massachusetts General Hospital; Cancer Center Survivorship Program, Massachusetts General Hospital Cancer Center; Joel S. Weissman, PhD, at Brigham and Women’s Hospital; Ann C. Mertens, PhD, MS, at Department of Pediatrics, Emory University School of Medicine; James D. Reschovsky, PhD, at Mathematica Policy Research; Leslie L. Robison, PhD, at Department of Epidemiology and Cancer Control, St Jude Children's Research Hospital; and Kelly A. Hyland, BA, at Moffitt Cancer Center. They were not compensated beyond their normal salaries.

References
1.
Howlader  N, Noone  A, Krapcho  M,  et al. Cancer Statistics Review, 1975-2011. Previous Version. SEER Cancer Statistics Review. https://seer.cancer.gov/archive/csr/1975_2011/. Accessed May 3, 2017.
2.
Park  ER, Li  FP, Liu  Y,  et al; Childhood Cancer Survivor Study.  Health insurance coverage in survivors of childhood cancer: the Childhood Cancer Survivor Study.  J Clin Oncol. 2005;23(36):9187-9197. doi:10.1200/JCO.2005.01.7418PubMedGoogle ScholarCrossref
3.
Public Law 111-148, Patient Protection and Affordable Care March 23, 2010. https://www.gpo.gov/fdsys/pkg/PLAW-111publ148/pdf/PLAW-111publ148.pdf. Accessed May 3, 2017.
4.
Park  ER, Kirchhoff  AC, Perez  GK,  et al.  Childhood Cancer Survivor Study participants’ perceptions and understanding of the Affordable Care Act.  J Clin Oncol. 2015;33(7):764-772. doi:10.1200/JCO.2014.58.0993PubMedGoogle ScholarCrossref
5.
Park  ER, Kirchhoff  AC, Zallen  JP,  et al.  Childhood Cancer Survivor Study participants’ perceptions and knowledge of health insurance coverage: implications for the Affordable Care Act.  J Cancer Surviv. 2012;6(3):251-259. doi:10.1007/s11764-012-0225-yPubMedGoogle ScholarCrossref
6.
Leopold  C, Park  ER, Nekhlyudov  L.  The impact of the affordable care act on cancer survivorship.  Cancer J. 2017;23(3):181-189.PubMedGoogle ScholarCrossref
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