Skip to main content
Log in

Emotional distress among adult survivors of childhood cancer

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

Abstract

Purpose

The purposes of this study were to estimate the prevalence of emotional distress in a large cohort of adult survivors of childhood cancer and to evaluate the interrelationship of risk factors including cancer-related late effects.

Methods

Adult survivors of childhood cancer (N = 1,863), median age of 32 years at follow-up, completed comprehensive medical evaluations. Clinically relevant emotional distress was assessed using the Brief Symptom Inventory 18 and was defined as T-scores ≥63. Odds ratios (ORs) and 95 % confidence intervals (CIs) were calculated using multivariable logistic regression models to identify risk factors for distress. Path analysis was used to examine associations among identified risk factors.

Results

Elevated global distress was reported by 15.1 % of survivors. Cancer-related pain was associated with elevated distress (OR 8.72; 95 % CI, 5.32–14.31). Survivors who reported moderate learning or memory problems were more likely to have elevated distress than survivors who reported no learning or memory problems (OR 3.27; 95 % CI, 2.17–4.93). Path analysis implied that cancer-related pain has a direct effect on distress symptoms and an indirect effect through socioeconomic status and learning or memory problems. Similar results were observed for learning or memory problems.

Conclusions

Childhood cancer-related morbidities including pain and learning or memory problems appear to be directly and indirectly associated with elevated distress symptoms decades after treatment. Understanding these associations may help inform intervention targets for survivors of childhood cancer experiencing symptoms of distress.

Implications for Cancer Survivors

A subset of long-term childhood cancer survivors experience significant emotional distress. Physical and cognitive late effects may contribute to these symptoms.

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

Fig. 1
Fig. 2

Similar content being viewed by others

References

  1. Siegel R, DeSantis C, Virgo K, Stein K, Mariotto A, Smith T, et al. Cancer treatment and survivorship statistics, 2012. CA Cancer J Clin. 2012;62(4):220–41.

    Article  PubMed  Google Scholar 

  2. Howlader N, Noone AM, Krapcho M, Neyman N, Aminou R, Altekruse SF, et al. SEER Cancer Statistics Review, 1975–2009 (Vintage 2009 Populations). Bethesda: National Cancer Institute; 2012.

    Google Scholar 

  3. 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.

    Article  PubMed  Google Scholar 

  4. Shaw AK, Morrison HI, Speechley KN, Maunsell E, Barrera M, Schanzer D, et al. The late effects study: design and subject representativeness of a Canadian, multi-centre study of late effects of childhood cancer. Chronic Dis Can. 2004;25(3–4):119–26.

    PubMed  Google Scholar 

  5. Hawkins MM, Lancashire ER, Winter DL, Frobisher C, Reulen RC, Taylor AJ, et al. The British Childhood Cancer Survivor Study: objectives, methods, population structure, response rates and initial descriptive information. Pediatr Blood Cancer. 2008;50(5):1018–25.

    Article  CAS  PubMed  Google Scholar 

  6. Kuehni CE, Rueegg CS, Michel G, Rebholz CE, Strippoli MP, Niggli FK, et al. Cohort profile: the Swiss Childhood Cancer Survivor Study. Int J Epidemiol. 2012;41(6):1553–64.

    Article  PubMed  Google Scholar 

  7. 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 J Am Med Assoc. 2003;290(12):1583–92.

    Article  CAS  Google Scholar 

  8. 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.

    Article  CAS  PubMed  Google Scholar 

  9. Diller L, Chow EJ, Gurney JG, Hudson MM, Kadin-Lottick NS, Kawashima TI, et al. Chronic disease in the Childhood Cancer Survivor Study cohort: a review of published findings. J Clin Oncol. 2009;27(14):2339–55.

    Article  PubMed Central  PubMed  Google Scholar 

  10. Hudson MM, Ness KK, Gurney JG, Mulrooney DA, Chemaitilly W, Krull KR, et al. Clinical ascertainment of health outcomes among adults treated for childhood cancer. JAMA J Am Med Assoc. 2013;309(22):2371–81.

    Article  CAS  Google Scholar 

  11. Ness KK, Gurney JG, Zeltzer LK, Leisenring W, Mulrooney DA, Nathan PC, et al. The impact of limitations in physical, executive, and emotional function on health-related quality of life among adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Arch Phys Med Rehabil. 2008;89(1):128–36.

    Article  PubMed  Google Scholar 

  12. Ness KK, Mertens AC, Hudson MM, Wall MM, Leisenring WM, Oeffinger KC, et al. Limitations on physical performance and daily activities among long-term survivors of childhood cancer. Ann Intern Med. 2005;143(9):639–47.

    Article  PubMed  Google Scholar 

  13. Ness KK, Baker KS, Dengel DR, Youngren N, Sibley S, Mertens AC, et al. Body composition, muscle strength deficits and mobility limitations in adult survivors of childhood acute lymphoblastic leukemia. Pediatr Blood Cancer. 2007;49(7):975–81.

    Article  PubMed  Google Scholar 

  14. Ness KK, Gurney JG. Adverse late effects of childhood cancer and its treatment on health and performance. Annu Rev Public Health. 2007;28:279–302.

    Article  PubMed  Google Scholar 

  15. Ellenberg L, Liu Q, Gioia G, Yasui Y, Packer RJ, Mertens A, et al. Neurocognitive status in long-term survivors of childhood CNS malignancies: a report from the Childhood Cancer Survivor Study. Neuropsychology. 2009;23(6):705–17.

    Article  PubMed Central  PubMed  Google Scholar 

  16. Edelstein K, Spiegler BJ, Fung S, Panzarella T, Mabbott DJ, Jewitt N, et al. Early aging in adult survivors of childhood medulloblastoma: long-term neurocognitive, functional, and physical outcomes. Neuro Oncol. 2011;13(5):536–45.

    Article  PubMed Central  PubMed  Google Scholar 

  17. Kadan-Lottick NS, Zeltzer LK, Liu Q, Yasui Y, Ellenberg L, Gioia G, et al. Neurocognitive functioning in adult survivors of childhood non-central nervous system cancers. J Natl Cancer Inst. 2010;102(12):881–93.

    Article  PubMed Central  PubMed  Google Scholar 

  18. Zebrack BJ, Gurney JG, Oeffinger K, Whitton J, Packer RJ, Mertens A, et al. Psychological outcomes in long-term survivors of childhood brain cancer: a report from the Childhood Cancer Survivor Study. J Clin Oncol. 2004;22(6):999–1006.

    Article  PubMed  Google Scholar 

  19. Zebrack BJ, Zeltzer LK, Whitton J, Mertens AC, Odom L, Berkow R, et al. Psychological outcomes in long-term survivors of childhood leukemia, Hodgkin’s disease, and non-Hodgkin’s lymphoma: a report from the Childhood Cancer Survivor Study. Pediatrics. 2002;110(1):42–52.

    Article  PubMed  Google Scholar 

  20. Zebrack BJ, Zevon MA, Turk N, Nagarajan R, Whitton J, Robison LL, et al. Psychological distress in long-term survivors of solid tumors diagnosed in childhood: a report from the Childhood Cancer Survivor Study. Pediatr Blood Cancer. 2007;49(1):47–51.

    Article  PubMed  Google Scholar 

  21. 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.

    Article  PubMed  Google Scholar 

  22. Zeltzer LK, Recklitis C, Buchbinder D, Zebrack B, Casillas J, Tsao JC, et al. Psychological status in childhood cancer survivors: a report from the Childhood Cancer Survivor Study. J Clin Oncol. 2009;27(14):2396–404.

    Article  PubMed Central  PubMed  Google Scholar 

  23. Michel G, Rebholz CE, von der Weid NX, Bergstraesser E, Kuehni CE. Psychological distress in adult survivors of childhood cancer: the Swiss Childhood Cancer Survivor Study. J Clin Oncol. 2010;28(10):1740–8.

    Article  PubMed  Google Scholar 

  24. Nathan PC, Ness KK, Greenberg ML, Hudson M, Wolden S, Davidoff A, et al. Health-related quality of life in adult survivors of childhood Wilms tumor or neuroblastoma: a report from the Childhood Cancer Survivor Study. Pediatr Blood Cancer. 2007;49(5):704–15.

    Article  PubMed  Google Scholar 

  25. Recklitis CJ, Diller LR, Li X, Najita J, Robison LL, Zeltzer L. Suicide ideation in adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. J Clin Oncol. 2010;28(4):655–61.

    Article  PubMed Central  PubMed  Google Scholar 

  26. Brinkman TM, Liptak CC, Delaney BL, Chordas CA, Muriel AC, Manley PE. Suicide ideation in pediatric and adult survivors of childhood brain tumors. J Neurooncol. 2013;113:425–32.

    Article  PubMed  Google Scholar 

  27. Miech RA, Power C, Eaton WW. Disparities in psychological distress across education and sex: a longitudinal analysis of their persistence within a cohort over 19 years. Ann Epidemiol. 2007;17(4):289–95.

    Article  PubMed  Google Scholar 

  28. Miech RA, Shanahan MJ. Socioeconomic status and depression over the life course. J Health Soc Behav. 2000;41(2):162–76.

    Article  Google Scholar 

  29. Recklitis CJ, O’Leary T, Diller L. Utility of routine psychological screening in the childhood cancer survivor clinic. J Clin Oncol. 2003;21(5):787–92.

    Article  PubMed  Google Scholar 

  30. Lu Q, Krull KR, Leisenring W, Owen JE, Kawashima T, Tsao JC, et al. Pain in long-term adult survivors of childhood cancers and their siblings: a report from the Childhood Cancer Survivor Study. Pain. 2011;152(11):2616–24.

    Article  PubMed Central  PubMed  Google Scholar 

  31. Moleski M. Neuropsychological, neuroanatomical, and neurophysiological consequences of CNS chemotherapy for acute lymphoblastic leukemia. Arch Clin Neuropsychol. 2000;15(7):603–30.

    Article  CAS  PubMed  Google Scholar 

  32. Mulhern RK, Fairclough D, Ochs J. A prospective comparison of neuropsychologic performance of children surviving leukemia who received 18-Gy, 24-Gy, or no cranial irradiation. J Clin Oncol. 1991;9(8):1348–56.

    CAS  PubMed  Google Scholar 

  33. Zou P, Li Y, Conklin HM, Mulhern RK, Butler RW, Ogg RJ. Evidence of change in brain activity among childhood cancer survivors participating in a cognitive remediation program. Arch Clin Neuropsychol. 2012;27(8):915–29.

    Article  PubMed Central  PubMed  Google Scholar 

  34. Butler RW, Copeland DR, Fairclough DL, Mulhern RK, Katz ER, Kazak AE, et al. A multicenter, randomized clinical trial of a cognitive remediation program for childhood survivors of a pediatric malignancy. J Consult Clin Psychol. 2008;76(3):367–78.

    Article  PubMed Central  PubMed  Google Scholar 

  35. Schuurs A, Green HJ. A feasibility study of group cognitive rehabilitation for cancer survivors: enhancing cognitive function and quality of life. Psycho-oncology. 2012;22:1043–9.

    Article  PubMed  Google Scholar 

  36. Kwekkeboom KL, Cherwin CH, Lee JW, Wanta B. Mind-body treatments for the pain-fatigue-sleep disturbance symptom cluster in persons with cancer. J Pain Symptom Manag. 2010;39(1):126–38.

    Article  Google Scholar 

  37. Moryl N, Coyle N, Essandoh S, Glare P. Chronic pain management in cancer survivors. J Natl Compr Cancer Netw. 2010;8(9):1104–10.

    Google Scholar 

  38. Hudson MM, Ness KK, Nolan VG, Armstrong GT, Green DM, Morris EB, et al. Prospective medical assessment of adults surviving childhood cancer: study design, cohort characteristics, and feasibility of the St. Jude Lifetime Cohort Study. Pediatr Blood Cancer. 2011;56(5):825–36.

    Article  PubMed Central  PubMed  Google Scholar 

  39. Landier W, Bhatia S, Eshelman DA, Forte KJ, Sweeney T, Hester AL, et al. Development of risk-based guidelines for pediatric cancer survivors: the Children’s Oncology Group Long-Term Follow-Up Guidelines from the Children’s Oncology Group Late Effects Committee and Nursing Discipline. J Clin Oncol. 2004;22(24):4979–90.

    Article  PubMed  Google Scholar 

  40. Children’s Oncology Group. Long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers, version 3.0. 2008. Available from: http://www.survivorshipguidelines.org. Accessed 15 July 2013.

  41. Derogatis LR. Brief Symptom Inventory 18: administration, scoring, and procedures manual. Minneapolis: NCS Pearson; 2001.

    Google Scholar 

  42. Zabora JR, Smith-Wilson R, Fetting JH, Enterline JP. An efficient method for psychosocial screening of cancer patients. Psychosomatics. 1990;31(2):192–6.

    Article  CAS  PubMed  Google Scholar 

  43. Zabora J, BrintzenhofeSzoc K, Jacobsen P, Curbow B, Piantadosi S, Hooker C, et al. A new psychosocial screening instrument for use with cancer patients. Psychosomatics. 2001;42(3):241–6.

    Article  CAS  PubMed  Google Scholar 

  44. 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.

    Article  PubMed  Google Scholar 

  45. Recklitis CJ, Parsons SK, Shih MC, Mertens A, Robison LL, Zeltzer L. 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.

    Article  PubMed  Google Scholar 

  46. Crapo RO, Casaburi R, Coates AL, Enright P, MacIntyre N, McKay R, et al. ATS statement: guidelines for the six-minute walk test. Am J Respir Crit Care Med. 2002;166(1):111–7.

    Article  Google Scholar 

  47. NeuroCom International Inc. SOT norms. Clackamas: NeuroCom International Inc.; 2007.

    Google Scholar 

  48. NeuroCom. Setting the standard in balance and mobility: SMART Equitest. Clackamas: NeuroCom; 2012.

    Google Scholar 

  49. Mathiowetz V, Weber K, Volland G, Kashman N. Reliability and validity of grip and pinch strength evaluations. J Hand Surg. 1984;9(2):222–6.

    Article  CAS  Google Scholar 

  50. Raghunathan TE, Lepkowski JM, Van Hoewyk J, Solenberger P. A multivariate technique for multiply imputing missing values using a sequence of regression models. Surv Methodol. 2001;27(1):85–95.

    Google Scholar 

  51. Rubin DB. Multiple imputation for nonresponse in surveys. New York: Wiley; 1987.

    Book  Google Scholar 

  52. Kish L, Frankel MR. Inference from complex samples. J R Stat Soc Ser B Methodol. 1974;36(1):1–37.

    Google Scholar 

  53. Anderson JC, Gerbing DW. Structural equation modeling in practice: a review and recommended two-step approach. Psychol Bull. 1988;103(3):411–23.

    Article  Google Scholar 

  54. Marsh HW, Hau K, Wen Z. In search of golden rules: comment on hypothesis-testing approaches to setting cutoff values for fit indexes and dangers in overgeneralizing Hu and Bentler’s (1999) findings. Struct Equ Model. 2004;11(3):320–41.

    Article  Google Scholar 

  55. Hu L, Bentler PM. Cutoff criteria for fit indexes in covariance structure analysis: conventional criteria versus new alternatives. Struct Equ Model Multidiscip J. 1999;6(1):1–55.

    Article  Google Scholar 

  56. Bentler PM. Comparative fit indexes in structural models. Psychol Bull. 1990;107(2):238–46.

    Article  CAS  PubMed  Google Scholar 

  57. Weston R, Gore PA. A brief guide to structural equation modeling. Couns Psychol. 2006;34(5):719–51.

    Article  Google Scholar 

  58. Steiger JH. Understanding the limitations of global fit assessment in structural equation modeling. Personal Individ Differ. 2007;42(5):893–8.

    Article  Google Scholar 

  59. Maunsell E, Brisson J, Deschenes L. Arm problems and psychological distress after surgery for breast cancer. Can J Surg. 1993;36(4):315–20.

    CAS  PubMed  Google Scholar 

  60. Keefe FJ, Abernethy AP, Campbell LC. Psychological approaches to understanding and treating disease-related pain. Annu Rev Psychol. 2005;56:601–30.

    Article  PubMed  Google Scholar 

  61. Burton AW, Fanciullo GJ, Beasley RD, Fisch MJ. Chronic pain in the cancer survivor: a new frontier. Pain Med. 2007;8(2):189–98.

    Article  PubMed  Google Scholar 

  62. Krull KR, Gioia G, Ness KK, Ellenberg L, Recklitis C, Leisenring W, et al. Reliability and validity of the Childhood Cancer Survivor Study neurocognitive questionnaire. Cancer. 2008;113(8):2188–97.

    Article  PubMed Central  PubMed  Google Scholar 

  63. Punyko JA, Gurney JG, Scott Baker K, Hayashi RJ, Hudson MM, Liu Y, et al. Physical impairment and social adaptation in adult survivors of childhood and adolescent rhabdomyosarcoma: a report from the Childhood Cancer Survivors Study. Psycho-oncol. 2007;16(1):26–37.

    Article  Google Scholar 

  64. Butt Z, Wagner LI, Beaumont JL, Paice JA, Peterman AH, Shevrin D, et al. Use of a single-item screening tool to detect clinically significant fatigue, pain, distress, and anorexia in ambulatory cancer practice. J Pain Symptom Manag. 2008;35(1):20–30.

    Article  Google Scholar 

  65. Roth AJ, Kornblith AB, Batel-Copel L, Peabody E, Scher HI, Holland JC. Rapid screening for psychologic distress in men with prostate carcinoma: a pilot study. Cancer. 1998;82(10):1904–8.

    Article  CAS  PubMed  Google Scholar 

  66. Recklitis CJ, Licht I, Ford J, Oeffinger K, Diller L. Screening adult survivors of childhood cancer with the distress thermometer: a comparison with the SCL-90-R. Psycho-oncol. 2007;16(11):1046–9.

    Article  Google Scholar 

  67. Krull KR, Okcu MF, Potter B, Jain N, Dreyer Z, Kamdar K, et al. Screening for neurocognitive impairment in pediatric cancer long-term survivors. J Clin Oncol. 2008;26(25):4138–43.

    Article  PubMed  Google Scholar 

  68. Ojha RP, Oancea SC, Ness KK, Lanctot JQ, Srivastava DK, Robison LL, et al. Assessment of potential bias from non-participation in a dynamic clinical cohort of long-term childhood cancer survivors: results from the St. Jude Lifetime Cohort Study. Pediatr Blood Cancer. 2013;60(5):856–64.

    Article  PubMed Central  PubMed  Google Scholar 

Download references

Funding

This work was supported by St. Jude Children’s Research Hospital Cancer Center Support (CORE) grant CA 21765 from the National Cancer Institute and by the American Lebanese Syrian Associated Charities (ALSAC).

Conflict of interest

Nothing to report

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Tara M. Brinkman.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Oancea, S.C., Brinkman, T.M., Ness, K.K. et al. Emotional distress among adult survivors of childhood cancer. J Cancer Surviv 8, 293–303 (2014). https://doi.org/10.1007/s11764-013-0336-0

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11764-013-0336-0

Keywords

Navigation