Skip to main content

Advertisement

Log in

Medical care in adolescents and young adult cancer survivors: what are the biggest access-related barriers?

  • Published:
Journal of Cancer Survivorship Aims and scope Submit manuscript

Abstract

Purpose

Adolescent and young adult (AYA) cancer survivors experience barriers to utilizing healthcare, but the determinants of cancer-related medical care of AYAs has not been fully explored.

Methods

We studied factors associated with medical care utilization among 465 AYA cancer survivors in the AYA Health Outcomes and Patient Experience Study, a cohort of 15 to 39 year olds recently diagnosed with germ cell cancer, lymphoma, sarcoma, or acute lymphocytic leukemia. Descriptive statistics and multivariate logistic regression methods were used.

Results

Most AYA cancer survivors (95 %), who were 15–35 months post diagnosis, received medical care in the past 12 months and 17 % were undergoing cancer treatment. In multivariate analyses, compared with AYAs with no cancer-related medical visits in the previous year, AYAs receiving cancer-related care were more likely to currently have health insurance (odds ratio (OR) = 4.9; 95 % confidence interval (CI) = 1.7–13.8) or have had health insurance in the past year (OR = 4.0; 95 % CI = 0.99–16.3). Cancer recurrence, lacking employment, and negative changes in self-reported general health were associated with ongoing cancer treatment versus other cancer-related medical care. Eleven percent of all AYAs and 25 % of AYAs who did not receive medical care in the past 12 months lost health insurance between the initial and follow-up surveys.

Conclusion

AYA cancer survivors with health insurance were much more likely to receive cancer-related medical care than those without insurance.

Implications for Cancer Survivors

Despite the need for post-treatment medical care, lacking health insurance is a barrier to receiving any medical care among AYAs.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. Zeltzer LK, Lu Q, Leisenring W, Tsao JC, Recklitis C, Armstrong G, et al. Psychosocial outcomes and health-related quality of life in adult childhood cancer survivors: a report from the childhood cancer survivor study. Cancer Epidemiol Biomarkers Prev. 2008;17(2):435–46. doi:10.1158/1055-9965.EPI-07-2541.

    Article  PubMed  Google Scholar 

  2. Hudson MM, Mertens AC, Yasui Y, Hobbie W, Chen H, Gurney JG, et al. Health status of adult long-term survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. JAMA. 2003;290(12):1583–92. doi:10.1001/jama.290.12.1583.

    Article  CAS  PubMed  Google Scholar 

  3. Oeffinger KC, Mertens AC, Sklar CA, Kawashima T, Hudson MM, Meadows AT, et al. Chronic health conditions in adult survivors of childhood cancer. N Engl J Med. 2006;355(15):1572–82. doi:10.1056/NEJMsa060185.

    Article  CAS  PubMed  Google Scholar 

  4. Oeffinger KC, Tonorezos ES. The cancer is over, now what?: Understanding risk, changing outcomes. Cancer. 2011;117(10 Suppl):2250–7. doi:10.1002/cncr.26051.

    Article  PubMed  Google Scholar 

  5. Parsons HM, Harlan LC, Lynch CF, Hamilton AS, Wu XC, Kato I, et al. Impact of cancer on work and education among adolescent and young adult cancer survivors. J Clin Oncol. 2012;30(19):2393–400. doi:10.1200/JCO.2011.39.6333.

    Article  PubMed Central  PubMed  Google Scholar 

  6. Parsons HM, Harlan LC, Seibel NL, Stevens JL, Keegan TH. Clinical trial participation and time to treatment among adolescents and young adults with cancer: does age at diagnosis or insurance make a difference? J Clin Oncol. 2011;29(30):4045–53. doi:10.1200/JCO.2011.36.2954.

    Article  PubMed Central  PubMed  Google Scholar 

  7. Keegan TH, Lichtensztajn DY, Kato I, Kent EE, Wu XC, West MM, et al. Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study. J Cancer Surviv. 2012;6(3):239–50. doi:10.1007/s11764-012-0219-9.

    Article  PubMed Central  PubMed  Google Scholar 

  8. Nathan PC, Greenberg ML, Ness KK, Hudson MM, Mertens AC, Mahoney MC, et al. Medical care in long-term survivors of childhood cancer: a report from the childhood cancer survivor study. J Clin Oncol. 2008;26(27):4401–9. doi:10.1200/JCO.2008.16.9607.

    Article  PubMed Central  PubMed  Google Scholar 

  9. Ward E, Halpern M, Schrag N, Cokkinides V, DeSantis C, Bandi P, et al. Association of insurance with cancer care utilization and outcomes. CA Cancer J Clin. 2008;58(1):9–31. doi:10.3322/CA.2007.0011.

    Article  PubMed  Google Scholar 

  10. Oeffinger KC, Mertens AC, Hudson MM, Gurney JG, Casillas J, Chen H, et al. Health care of young adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Ann Fam Med. 2004;2(1):61–70.

    Article  PubMed Central  PubMed  Google Scholar 

  11. Casillas J, Castellino SM, Hudson MM, Mertens AC, Lima IS, Liu Q, et al. Impact of insurance type on survivor-focused and general preventive health care utilization in adult survivors of childhood cancer: the Childhood Cancer Survivor Study (CCSS). Cancer. 2011;117(9):1966–75. doi:10.1002/cncr.25688.

    Article  PubMed Central  PubMed  Google Scholar 

  12. Park ER, Li FP, Liu Y, Emmons KM, Ablin A, Robison LL, et al. Health insurance coverage in survivors of childhood cancer: the Childhood Cancer Survivor Study. J Clin Oncol. 2005;23(36):9187–97.

    Article  PubMed  Google Scholar 

  13. Adams SH, Newacheck PW, Park MJ, Brindis CD, Irwin Jr CE. Health insurance across vulnerable ages: patterns and disparities from adolescence to the early 30s. Pediatrics. 2007;119(5):e1033–9. doi:10.1542/peds.2006-1730.

    Article  PubMed  Google Scholar 

  14. Pollock BH. Where adolescents and young adults with cancer receive their care: does it matter? J Clin Oncol. 2007;25(29):4522–3. doi:10.1200/JCO.2007.12.1715.

    Article  PubMed  Google Scholar 

  15. Albritton KH, Wiggins CH, Nelson HE, Weeks JC. Site of oncologic specialty care for older adolescents in Utah. J Clin Oncol. 2007;25(29):4616–21. doi:10.1200/JCO.2006.08.4103.

    Article  PubMed  Google Scholar 

  16. Howell DL, Ward KC, Austin HD, Young JL, Woods WG. Access to pediatric cancer care by age, race, and diagnosis, and outcomes of cancer treatment in pediatric and adolescent patients in the state of Georgia. J Clin Oncol. 2007;25(29):4610–5. doi:10.1200/JCO.2006.07.6992.

    Article  PubMed  Google Scholar 

  17. Kirchhoff AC, Lyles CR, Fluchel M, Wright J, Leisenring W. Limitations in health care access and utilization among long-term survivors of adolescent and young adult cancer. Cancer. 2012;118(23):5964–72. doi:10.1002/cncr.27537.

    Article  PubMed  Google Scholar 

  18. Harlan LC, Lynch CF, Keegan TH, Hamilton AS, Wu XC, Kato I, et al. Recruitment and follow-up of adolescent and young adult cancer survivors: the AYA HOPE Study. J Cancer Surviv. 2011;5(3):305–14. doi:10.1007/s11764-011-0173-y.

    Article  PubMed Central  PubMed  Google Scholar 

  19. National Cancer Institute. Closing the gap: research and care imperatives for adolescents and young adults with cancer. Report of the Adolescent and Young Adult Oncology Progress Review Group. Bethesda: National Cancer Institute 2006.

  20. Robison LL, Mertens AC, Boice JD, Breslow NE, Donaldson SS, Green DM, et al. Study design and cohort characteristics of the Childhood Cancer Survivor Study: a multi-institutional collaborative project. Med Pediatr Oncol. 2002;38(4):229–39. doi:10.1002/mpo.1316.

    Article  PubMed  Google Scholar 

  21. Tai E, Buchanan N, Townsend J, Fairley T, Moore A, Richardson LC. Health status of adolescent and young adult cancer survivors. Cancer. 2012;118(19):4884–91. doi:10.1002/cncr.27445.

    Article  PubMed  Google Scholar 

  22. Nicholson JL, Collins SR, Mahato B, Gould E, Schoen C, Rustgi SD. Rite of passage? Why young adults become uninsured and how new policies can help, 2009 update. Issue Brief (Commonwealth Fund). 2009;64:1–20.

    Google Scholar 

  23. Wolfson J, Ruccione K, Reaman GH. Health care reform 2010: expected favorable impact on childhood cancer patients and survivors. Cancer J. 2010;16(6):554–62. doi:10.1097/PPO.0b013e3181feee83.

    Article  PubMed  Google Scholar 

  24. Bleyer A, Ulrich C, Martin S. Young adults, cancer, health insurance, socioeconomic status, and the Patient Protection and Affordable Care Act. Cancer. 2012;118(24):6018–21. doi:10.1002/cncr.27685.

    Article  PubMed  Google Scholar 

  25. Moy B, Polite BN, Halpern MT, Stranne SK, Winer EP, Wollins DS, et al. American Society of Clinical Oncology policy statement: opportunities in the patient protection and affordable care act to reduce cancer care disparities. J Clin Oncol. 2011;29(28):3816–24. doi:10.1200/JCO.2011.35.8903.

    Article  PubMed  Google Scholar 

  26. Brown ML, Yabroff KR. Economic impact of cancer in the United States. In: Schottenfeld D, Fraumeni J, editors. Cancer Epidemiology and Prevention. 3rd ed. New York: Oxford Univ; 2006. p. 202–14.

    Chapter  Google Scholar 

  27. Gruber J, Perry I. Will the Affordable Care Act make health insurance affordable? Issue Brief (Commonw Fund). 2011;2:1–15.

    Google Scholar 

  28. Nicholson JL, Collins SR. Young, uninsured, and seeking change: health coverage of young adults and their views on health reform. Findings from the Commonwealth fund Survey of Young Adults (2009). Issue Brief (Commonwealth Fund). 2009;73:1–22.

    Google Scholar 

  29. Green DM. Late effects of treatment for cancer during childhood and adolescence. Curr Probl Cancer. 2003;27(3):127–42.

    Article  PubMed  Google Scholar 

  30. Casillas J, Kahn KL, Doose M, Landier W, Bhatia S, Hernandez J, et al. Transitioning childhood cancer survivors to adult-centered healthcare: insights from parents, adolescent, and young adult survivors. Psychooncology. 2010;19(9):982–90. doi:10.1002/pon.1650.

    Article  PubMed  Google Scholar 

  31. Klosky JL, Howell CR, Li Z, Foster RH, Mertens AC, Robison LL, et al. Risky health behavior among adolescents in the childhood cancer survivor study cohort. J Pediatr Psychol. 2012;37(6):634–46. doi:10.1093/jpepsy/jss046.

    Article  PubMed Central  PubMed  Google Scholar 

  32. Nathan PC, Ford JS, Henderson TO, Hudson MM, Emmons KM, Casillas JN, et al. Health behaviors, medical care, and interventions to promote healthy living in the Childhood Cancer Survivor Study cohort. J Clin Oncol. 2009;27(14):2363–73. doi:10.1200/JCO.2008.21.1441.

    Article  PubMed Central  PubMed  Google Scholar 

Download references

Acknowledgments

This study was supported by the National Cancer Institute contracts N01-PC-54402, N01-PC-54404, N01-PC-35136, N01-PC-35139, N01-PC-35142, N01-PC-35143, and N01-PC-35145. Dr. Parsons was supported by a National Cancer Institute Cancer Prevention and Control Career Development Award (K07CA175063).

Author information

Authors and Affiliations

Authors

Consortia

Corresponding author

Correspondence to Theresa H. M. Keegan.

Additional information

AYA HOPE Study Collaborative Group is composed of the following: California Cancer Registry/Public Health Institute (Sacramento, CA): Rosemary Cress, Dr. PH (P.I.); Gretchen Agha; and Mark Cruz. Fred Hutchinson Cancer Research Center (Seattle, WA): Stephen M. Schwartz, Ph.D. (P.I.); Martha Shellenberger; and Tiffany Janes. Karmanos Cancer Center (Detroit, MI): Ikuko Kato, M.D., Ph.D. (P.I.); Ann Bankowski; and Marjorie Stock. Louisiana State University (New Orleans, LA): Xiao-cheng Wu, M.D., MPH (P.I.); Vivien Chen; and Bradley Tompkins. Cancer Prevention Institute of California (Fremont, CA): Theresa Keegan, Ph.D., M.S. (P.I.); Laura Allen; Zinnia Loya; and Lisa Shelton-Herendeen. University of Iowa (Iowa City, IA): Charles F. Lynch M.D., Ph.D. (P.I.); Michele M. West; and Lori A. Odle. University of Southern California (Los Angeles, CA): Ann Hamilton, Ph. D (P.I.); Jennifer Zelaya; Mary Lo; and Urduja Trinidad. National Cancer Institute (Bethesda, MD): Linda C. Harlan, BSN, MPH, Ph.D.; (Investigator) Ashley Wilder Smith, Ph.D., MPH (Investigator); Jana Eisenstein; and Gretchen Keel. Consultants: Arnold Potosky, Ph.D.; Keith Bellizzi, Ph.D.; Karen Albritton, MD; Michael Link, MD; and Brad Zebrack, Ph.D.; MSW

Rights and permissions

Reprints and permissions

About this article

Cite this article

Keegan, T.H.M., Tao, L., DeRouen, M.C. et al. Medical care in adolescents and young adult cancer survivors: what are the biggest access-related barriers?. J Cancer Surviv 8, 282–292 (2014). https://doi.org/10.1007/s11764-013-0332-4

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11764-013-0332-4

Keywords

Navigation