Journal of Cancer Survivorship

, Volume 12, Issue 4, pp 528–536 | Cite as

Mental health insurance access and utilization among childhood cancer survivors: a report from the childhood cancer survivor study

  • Giselle K. Perez
  • Anne C. Kirchhoff
  • Christopher Recklitis
  • Kevin R. Krull
  • Karen A. Kuhlthau
  • Paul C. Nathan
  • Julia Rabin
  • Gregory T. Armstrong
  • Wendy Leisenring
  • Leslie L. Robison
  • Elyse R. Park



To describe and compare the prevalence of mental health access, preference, and use among pediatric cancer survivors and their siblings. To identify factors associated with mental health access and use among survivors.


Six hundred ninety-eight survivors in the Childhood Cancer Survivor Study (median age = 39.4; median years from diagnosis = 30.8) and 210 siblings (median age = 40.4) were surveyed. Outcomes included having mental health insurance coverage, delaying care due to cost, perceived value of mental health benefits, and visiting a mental health provider in the past year.


There were no differences in mental health access, preferences, and use between survivors and siblings (p > 0.05). Among respondents with a history of distress, most reported not having seen a mental health provider in the past year (80.9% survivors vs. 77.1% siblings; p = 0.60). Uninsured survivors were more likely to defer mental health services due to cost (24.6 vs. 8.4%; p < 0.001). In multivariable models, males (OR = 2.96) and survivors with public (OR = 6.61) or employer-sponsored insurance (ESI; OR = 14.37) were more likely to have mental health coverage.


Most childhood cancer survivors value having mental healthcare benefits; however, coverage and use of mental health services remain suboptimal. The most vulnerable of survivors, specifically the uninsured and those with a history of distress, are at risk of experiencing challenges accessing mental health care.

Implications for Cancer Survivors

Childhood cancer survivors are at risk for experiencing high levels of daily life stress that is compounded by treatment-related sequelae. Integrative, system-based approaches that incorporate financial programs with patient education about insurance benefits can help reduce some of the financial barriers survivors face.


Childhood cancer Survivorship Insurance Mental health Distress 



This work was supported by the LIVESTRONG Foundation (E. Park, Principal Investigator) and the National Cancer Institute (CA55727, G.T. Armstrong, Principal Investigator). Support to St. Jude Children’s Research Hospital also provided by the Cancer Center Support (CORE) grant (CA21765, C. Roberts, Principal Investigator) and the American Lebanese-Syrian Associated Charities (ALSAC).

Compliance with ethical standards

Conflict of interest

The authors have no conflict of interest to report.

Supplementary material

11764_2018_691_MOESM1_ESM.docx (40 kb)
ESM 1 (DOCX 39 kb)


  1. 1.
    Dowling E, Yabroff KR, Mariotto A, McNeel T, Zeruto C, Buckman D. Burden of illness in adult survivors of childhood cancer. Cancer. 2010;116(15):3712–21.CrossRefPubMedPubMedCentralGoogle Scholar
  2. 2.
    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.CrossRefPubMedPubMedCentralGoogle Scholar
  3. 3.
    Philips SM, Padgett LS, Leisenring WM, et al. Survivors of childhood cancer in the United States: prevalence and burden of morbidity. Cancer Epidemiology, biomarkers & prevention: a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventative Oncology. 2015;24(4):653–63.CrossRefGoogle Scholar
  4. 4.
    Howlander N, Noone AM, Krapacho M, et al. SEER cancer statistics review, 1975-2010. Bethesda: National Cancer Institute; 2013.Google Scholar
  5. 5.
    Mueller S, Fullerton HJ, Stratton K, Leisenring W, Weathers RE, Stovall M, et al. Radiation, atherosclerotic risk factors, and stroke risk in survivors of pediatric cancer: a report from the childhood cancer survivor study. Int J Radiat Oncol Biol Phys. 2013;86(4):649–55.CrossRefPubMedPubMedCentralGoogle Scholar
  6. 6.
    Parry C. Embracing uncertainty: an exploration of the experiences of childhood cancer survivors. Qual Health Res. 2003;13(2):227–46.CrossRefPubMedGoogle Scholar
  7. 7.
    van Dijk EM, van Dulmen-Den Broeder E, GJL K, van Dam EWCM, Braam KI, Huisman J. Psychosexual functioning of childhood cancer survivors. Psychooncology. 2008;17(15):506–11.CrossRefPubMedGoogle Scholar
  8. 8.
    Armstrong GT, Liu Q, Yasul Y, et al. Long-term outcomes among adult survivors of childhood central nervous system malignancies in the Childhood Cancer Survivor Study. J Natl Cancer Inst. 2009;101(13):946–58.CrossRefPubMedPubMedCentralGoogle Scholar
  9. 9.
    Kadan-Lottic NS, Zeltzer LK, Liu Q, et al. Neurocognitive functioning in adult survivors of childhood non-central nervous system cancers. J Natl Cancer Inst. 2010;102(12):881–93.CrossRefGoogle Scholar
  10. 10.
    Langeveld NE, Grootenhuis MA, Voute PA, De Haan RJ, van Den Bos C. Quality of life, self-esteem, and worries in young adult survivors of childhood cancer. Psychooncology. 2004;13(12):867–81.CrossRefPubMedGoogle Scholar
  11. 11.
    Michel G, Greenfield DM, Absolom K, Ross RJ, Davies H, Eiser C. Follow-up care after childhood cancer: survivors’ expectations and preferences for care. Eur J Cancer. 2009;45(9):1616–23.CrossRefPubMedGoogle Scholar
  12. 12.
    Hobbie WL, Stuber M, Meeske K, Wissler K, Rourke MT. Symptoms of postraumatic stress in young adult survivors of childhood cancers. J Clin Oncol. 2000;18(24):4060–6.CrossRefPubMedGoogle Scholar
  13. 13.
    Stuber ML, Meeske KA, Krull KR, et al. Prevalence and predictors of posttraumatic stress disorder in adult survivors of childhood cancer. Pediatr. 2010;125(5):1124–34.CrossRefGoogle Scholar
  14. 14.
    Brackett J, Krull KR, Scheurer ME, Liu W, Srivastava DK, Stovall M, et al. Antioxidant enzyme polymorphisms and neuropsychological outcomes in medulloblastoma survivors: a report from the Childhood Cancer Survivor Study. Neuro-Oncology. 2012;14(8):1018–25.CrossRefPubMedPubMedCentralGoogle Scholar
  15. 15.
    Lipari R, Hedden S, Blau G, Rubenstein L. Adolescent mental health service use and reasons for using services in specialty educational and general medical setting. Rockville: Substance Abuse and Mental Health Services Administration; 2016.Google Scholar
  16. 16.
    Hewitt M, Rowland JH. Mental health service use among adult cancer survivors: analyses of the National Health Interview Survey. J Clin Oncol. 2002;20(23):4581–90.CrossRefPubMedGoogle Scholar
  17. 17.
    Gianinazzi ME, Rueegg CS, von der Weid NX, Niggli FK, Kuehni CE, Michel G. Mental health-care utilization in survivors of childhood cancer and siblings: the Swiss childhood cancer survivor study. Support Care Cancer. 2014;22(2):339–49.CrossRefPubMedGoogle Scholar
  18. 18.
    Fair DB, Kirchhoff AC, Nipp RD, et al. Impact of health care costs on utilization of needed health care in the Childhood Cancer Survivor Study (CCSS). J Clin Oncol. 2016; 34(3).Google Scholar
  19. 19.
    Park ER, Kirchhoff AC, Perez GK, Leisenring W, Weissman JS, Donelan K, et al. Childhood Cancer Survivor Study participants’ perceptions and understanding of the Affordable Care Act. J Clin Oncol. 2015;33(7):764–72.CrossRefPubMedPubMedCentralGoogle Scholar
  20. 20.
    Forsbach T, Thompson A. The impact of childhood cancer on adult survivors’ interpersonal relationships. Child Care in Practice. 2009;9(2):117–28.CrossRefGoogle Scholar
  21. 21.
    Kinahan KE, Sharp LK, Seidel K, et al. Scarring, disfigurement, and quality of life in long-term survivors of childhood cancer: a report from the childhood cancer survivor study. J Clin Oncol. 2012;30(20):2466–74.CrossRefPubMedPubMedCentralGoogle Scholar
  22. 22.
    Krull KR, Annett RD, Pan Z, Ness KK, Nathan PC, Srivastava DK, et al. Neurocognitive functioning and health-related behaviors in adult survivors of childhood cancer: a report from the childhood cancer survivor study. Eur J Cancer. 2011;47(9):1380–8.CrossRefPubMedPubMedCentralGoogle Scholar
  23. 23.
    Krull KR, Huang S, Gurney JG, Klosky JL, Leisenring W, Termuhlen A, et al. Adolescent behavior and adult health status in childhood cancer survivors. J Cancer Surviv. 2010;4(3):210–7.CrossRefPubMedPubMedCentralGoogle Scholar
  24. 24.
    Armstrong GT, Kawashima T, Leisenring W, Stratton K, Stovall M, Hudson MM, et al. Aging and risk of severe, disabling, life-threatening, and fatal events in the childhood cancer survivor study. J Clin Oncol. 2014;32(12):1218–27.CrossRefPubMedPubMedCentralGoogle Scholar
  25. 25.
    Robison LL, Armstrong GT, Boice JD, et al. The childhood Cancer survivor study: a National Cancer Institute—supported resource for outcome and intervention research. J Clin Oncol. 2009;27(14):2308–18.Google Scholar
  26. 26.
    Meadows AT, Friedman DL, Neglia JP, Mertens AC, Donaldson SS, Stovall M, et al. Second neoplasms in survivors of childhood cancer: findings from the Childhood Cancer Survivor Study cohort. J Clin Oncol. 2009;27(14):2356–62.CrossRefPubMedPubMedCentralGoogle Scholar
  27. 27.
    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.CrossRefPubMedGoogle Scholar
  28. 28.
    Derogatis LR. (2001). Brief Symptom Inventory (BSI)-18: Administration,scoring and procedures manual. Minneapolis, MN: NCS Pearson.Google Scholar
  29. 29.
    Recklitis CJ, Parsons SK, Shih M, Mertens A, et al. Factor structure of the Brief Symptom Inventory—18 in adult survivors of childhood cancer: results from the Childhood Cancer Survivor Study. Psychol Assess. 2006;18(1):22–32.CrossRefPubMedGoogle Scholar
  30. 30.
    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.CrossRefPubMedGoogle Scholar
  31. 31.
    Jacobsen PB, Donovan KA, Trask PC, Fleishman SB, Zabora J, Baker F, et al. Screening for psychologic distress in ambulatory cancer patients. Cancer. 2005;103(7):1494–502.CrossRefPubMedGoogle Scholar
  32. 32.
    Merport A, Recklitis CJ. Does the Brief Symptom Inventory-18 case rule apply in adult survivors of childhood cancer? Comparison with the symptom checklist-90. J Pediatr Psychol. 2012;37(6):650–9.CrossRefPubMedGoogle Scholar
  33. 33.
    The Mental Health Parity and Addiction Equity Act of 2008, Pub L (Feb 2, 2010).Google Scholar
  34. 34.
    Maxfield M, Achman L, Buck JA, Teich JL. National estimates of mental health insurance benefits. J Behav health Serv Res. 2007;34(1):830–95.CrossRefGoogle Scholar
  35. 35.
    Wu L, Schlenger WE. Private health insurance coverage for substance abuse and mental health services, 1995-1998. Psychiatr Serv. 2004;55(2):180–2.CrossRefPubMedPubMedCentralGoogle Scholar
  36. 36.
    Jacobsen PB. Clinical practice guidelines for the psychosocial care of cancer survivors: status and future prospects. Cancer. 2009;115(18):4419–29.CrossRefPubMedGoogle Scholar
  37. 37.
    Merport A, Bober SL, Grose A, Recklitis CJ. Can the distress thermometer (DT) identify significant psychological distress in long-term cancer survivors?: a comparison with the Brief Symptom Inventory-18 (BSI-18). Support Care Cancer. 2012;20(1):195–8.CrossRefPubMedGoogle Scholar
  38. 38.
    O’Leary TE, Diller L, Recklitis CJ. The effects of response bias on self-reported quality of life among childhood cancer survivors. Qual Life Res. 2007;16(7):1211–20.CrossRefPubMedGoogle Scholar
  39. 39.
    Nass SJ, Patlak M. Identifying and addressing the needs of adolescents and young adults with cancer: workshop summary. Washington: The National Academies Press; 2013.CrossRefGoogle Scholar
  40. 40.
    Alegria M, Canino G, Rios R, Vera M, Calderon J. Mental health care in Latinos: inequalities in use of specialty mental health services among Latinos, African Americans, and non-Latino Whites. Psych Serv. 2002;53(12):1547–55.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2018

Authors and Affiliations

  • Giselle K. Perez
    • 1
    • 2
  • Anne C. Kirchhoff
    • 3
  • Christopher Recklitis
    • 2
    • 4
  • Kevin R. Krull
    • 5
  • Karen A. Kuhlthau
    • 1
    • 2
  • Paul C. Nathan
    • 6
  • Julia Rabin
    • 1
  • Gregory T. Armstrong
    • 5
  • Wendy Leisenring
    • 7
  • Leslie L. Robison
    • 5
  • Elyse R. Park
    • 1
    • 2
  1. 1.Massachusetts General HospitalBostonUSA
  2. 2.Harvard Medical SchoolBostonUSA
  3. 3.Huntsman Cancer Institute and Department of PediatricsUniversity of UtahSalt Lake CityUSA
  4. 4.Dana-Farber Cancer InstituteBostonUSA
  5. 5.St. Jude Children’s Research HospitalMemphisUSA
  6. 6.The Hospital for Sick ChildrenTorontoCanada
  7. 7.Fred Hutchinson Cancer Research CenterSeattleUSA

Personalised recommendations