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Psychological Challenges and Adaptation in Long-Term Survivors of Childhood Cancer

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Part of the book series: Specialty Topics in Pediatric Neuropsychology ((STPN))

Abstract

While the majority of childhood cancer survivors will have successful psychosocial adaptation after treatment, childhood cancer and its associated late-effects increase the risk for adaptive challenges and psychological symptoms later in life. In this chapter we focus on understanding the psychological and adaptive challenges that arise in this population in the areas of psychological symptoms, quality-of-life (QOL), and social adaptation. Risk factors for poor psychosocial and QOL outcomes, as well as high-risk survivor groups, and the role of professionals in identifying and addressing survivors with poor adaptive outcomes are also presented. Results of research studies, particularly studies of large cohorts of survivors are presented to frame the prevalence and types of problems common in this group, and information and case examples drawn from clinical experience are presented to complement this research and to illuminate the effects of cancer on individual survivors.

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References

  1. Sawyer, M., Antoniou, G., Toogood, I., Rice, M., & Baghurst, P. (2000). Childhood cancer: A 4-year prospective study of the psychological adjustment of children and parents. Journal of Pediatric Hematology/Oncology, 22(3), 214–220.

    Article  PubMed  Google Scholar 

  2. Patenaude, A. F., & Kupst, M. J. (2005). Psychosocial functioning in pediatric cancer. Journal of Pediatric Psychology, 30(1), 9–27.

    Article  PubMed  Google Scholar 

  3. Zeltzer, L. K., Recklitis, C., Buchbinder, D., Zebrack, B., Casillas, J., Tsao, J. C., et al. (2009). Psychological status in childhood cancer survivors: A report from the childhood cancer survivor study. Journal of Clinical Oncology, 27, 2396–2404.

    Article  PubMed Central  PubMed  Google Scholar 

  4. Hudson, M. M., Mertens, A. C., Yasui, Y., Hobbie, W., Chen, H., Gurney, J. G., et al. (2003). Health status of adult long-term survivors of childhood cancer: A report from the childhood cancer survivor study. Journal of American Medical Association, 290(12), 1583–1592.

    Article  Google Scholar 

  5. Michel, G., Rebholz, C. E., von der Weid, N. X., Bergstraesser, E., & Kuehni, C. E. (2010). Psychological distress in adult survivors of childhood cancer: The Swiss childhood cancer survivor study. Journal of Clinical Oncology, 28(10), 1740–1748.

    Article  PubMed  Google Scholar 

  6. Hawkins, M. M., Lancashire, E. R., Winter, D. L., Frobisher, C., Reulen, R. C., Taylor, A. J., et al. (2008). The British childhood cancer survivor study: Objectives, methods, population structure, response rates and initial descriptive information. Pediatric Blood & Cancer, 50(5), 1018–1025. doi:10.1002/pbc.21335.

    Article  Google Scholar 

  7. Robison, L. L., Mertens, A. C., Boice, J. D., Breslow, N. E., Donaldson, S. S., Green, D. M., et al. (2002). Study design and cohort characteristics of the childhood cancer survivor study: A multi-institutional collaborative project. Medical and Pediatric Oncology, 38(4), 229–239.

    Article  PubMed  Google Scholar 

  8. Recklitis, C. J., Diller, L. R., Li, X., Najita, J., Robison, L. L., & Zeltzer, L. (2010). Suicide ideation in adult survivors of childhood cancer: A report from the childhood cancer survivor study. Journal of Clinical Oncology, 28(4), 655–661.

    Article  PubMed Central  PubMed  Google Scholar 

  9. Stuber, M. L., Meeske, K. A., Krull, K. R., Leisenring, W., Stratton, K., Kazak, A. E., et al. (2010). Prevalence and predictors of posttraumatic stress disorder in adult survivors of childhood cancer. Pediatrics, 125(5), e1124–e1134.

    Article  PubMed Central  PubMed  Google Scholar 

  10. Barakat, L. P., Alderfer, M. A., & Kazak, A. E. (2006). Posttraumatic growth in adolescent survivors of cancer and their mothers and fathers. Journal of Pediatric Psychology, 31(4), 413–419.

    Article  PubMed  Google Scholar 

  11. Lee, Y. L., Gau, B. S., Hsu, W. M., & Chang, H. H. (2009). A model linking uncertainty, post-traumatic stress, and health behaviors in childhood cancer survivors. Oncology Nursing Forum, 36(1), E20–E30. doi:10.1188/09.ONF. E20-E30.

    Article  PubMed  Google Scholar 

  12. NCCN. (2003). Distress management clinical practice guidelines. Journal of the National Comprehensive Cancer Network, 1, 344–374.

    Google Scholar 

  13. Holland, J., Andersen, B., Breitbart, W. S., Dabrowski, M., Dudley, M. M., Fleishman, S., et al. (2007). Distress management. Journal of the National Comprehensive Cancer Network, 5(1), 66–98.

    PubMed  Google Scholar 

  14. Holland, J., Andersen, B., Breitbart, W., Compas, B., Dudley, M., Fleishman, S., et al. (2010). Distress management. Journal of the National Comprehensive Cancer Network, 8(4), 448–485.

    PubMed  Google Scholar 

  15. Kornblith, A. (1998). Psychosocial adaptation of cancer survivors. In J. C. Holland (Ed.), Psycho-oncology (pp. 223–254). New York: Oxford University Press.

    Google Scholar 

  16. Jacobsen, P. (2007). Screening for pscyhological distress in cancer patients: Challenges and opportunities. Journal of Clinical Oncology, 25(29), 4526–4527.

    Article  PubMed  Google Scholar 

  17. Hays, R. D., Anderson, R., & Revicki, D. (1993). Psychometric considerations in evaluating health-related quality of life measures. Quality of Life Research, 2(6), 441–449.

    Article  PubMed  Google Scholar 

  18. Health-Related Quality of Life and Well-Being. (2010). Retrieved from http://healthypeople.gov/2020/about/QoLWBabout.aspx.

    Google Scholar 

  19. Zeltzer, L. K., Lu, Q., Leisenring, W., Tsao, J. C., Recklitis, C., Armstrong, G., et al. (2008). Psychosocial outcomes and health-related quality of life in adult childhood cancer survivors: A report from the childhood cancer survivor study. Cancer Epidemiology, Biomarkers & Prevention, 17(2), 435–446.

    Article  Google Scholar 

  20. Reulen, R. C., Winter, D. L., Lancashire, E. R., Zeegers, M. P., Jenney, M. E., Walters, S. J., et al. (2007). Health-status of adult survivors of childhood cancer: A large-scale population-based study from the British childhood cancer survivor study. International Journal of Cancer, 121(3), 633–634.

    Article  Google Scholar 

  21. Maunsell, E., Pogany, L., Barrera, M., Shaw, A. K., & Speechley, K. N. (2006). Quality of life among long-term adolescent and adult survivors of childhood cancer. Journal of Clinical Oncology, 24(16), 2527–2535.

    Article  PubMed  Google Scholar 

  22. Maurice-Stam, H., Grootenhuis, M. A., Caron, H. N., & Last, B. F. (2007). Course of life of survivors of childhood cancer is related to quality of life in young adulthood. Journal of Psychosocial Oncology, 25(3), 43–58. doi:10.1300/J077v25n03_03.

    Article  PubMed  Google Scholar 

  23. Gurney, J. G., Krull, K. R., Kadan-Lottick, N., Nicholson, H. S., Nathan, P. C., Zebrack, B., et al. (2009). Social outcomes in the childhood cancer survivor study cohort. Journal of Clinical Oncology, 27(14), 2390–2395.

    Article  PubMed Central  PubMed  Google Scholar 

  24. Barrera, M., Shaw, A. K., Speechley, K. N., Maunsell, E., & Pogany, L. (2005). Educational and social late effects of childhood cancer and related clinical, personal, and familial characteristics. Cancer, 104, 1751–1760.

    Article  PubMed  Google Scholar 

  25. Pang, J. W., Friedman, D. L., Whitton, J. A., Stovall, M., Mertens, A. C., Robison, L. L., et al. (2008). Employment status among adult survivors in the childhood cancer survivor study. Pediatric Blood & Cancer, 50(1), 104–110.

    Article  Google Scholar 

  26. Kirchhoff, A. C., Krull, K. R., Ness, K. K., Armstrong, G. T., Park, E. R., Stovall, M., et al. (2011). Physical, mental, and neurocognitive status and employment outcomes in the childhood cancer survivor study cohort. Cancer Epidemiology, Biomarkers & Prevention, 20(9), 1838–1849. doi:10.1158/1055-9965.EPI-11-0239.

    Article  Google Scholar 

  27. Kirchhoff, A. C., Leisenring, W., Krull, K. R., Ness, K. K., Friedman, D. L., Armstrong, G. T., et al. (2010). Unemployment among adult survivors of childhood cancer: A report from the childhood cancer survivor study. Medical Care, 48(11), 1015–1025. doi:10.1097/MLR.0b013e3181eaf880.

    Article  PubMed Central  PubMed  Google Scholar 

  28. Oeffinger, K. C., Mertens, A. C., Sklar, C. A., Kawashima, T., Hudson, M. M., Meadows, A. T., et al. (2006). Chronic health conditions in adult survivors of childhood cancer. The New England Journal of Medicine, 355(15), 1572–1582.

    Article  PubMed  Google Scholar 

  29. Park, E. R., Li, F. P., Liu, Y., Emmons, K. M., Ablin, A., Robison, L. L., et al. (2005). Health insurance coverage in survivors of childhood cancer: The childhood cancer survivor study. Journal of Clinical Oncology, 23(36), 9187–9197.

    Article  PubMed  Google Scholar 

  30. Pastore, G., Mosso, M. L., Magnani, C., Luzzatto, L., Bianchi, M., & Terracini, B. (2001). Physical impairment and social life goals among adult long-term survivors of childhood cancer: A population-based study from the childhood cancer registry of Piedmont, Italy. Tumori, 87(6), 372–378.

    PubMed  Google Scholar 

  31. Frobisher, C., Lancashire, E. R., Winter, D. L., Jenkinson, H. C., & Hawkins, M. M. (2007). Long-term population-based marriage rates among adult survivors of childhood cancer in Britain. International Journal of Cancer, 121(4), 846–855.

    Article  Google Scholar 

  32. Janson, C., Leisenring, W., Cox, C., Termuhlen, A. M., Mertens, A. C., Whitton, J. A., et al. (2009). Predictors of marriage and divorce in adult survivors of childhood cancers: A report from the childhood cancer survivor study. Cancer Epidemiology, Biomarkers & Prevention, 18(10), 2626–2635.

    Article  Google Scholar 

  33. Kunin-Batson, A., Kadan-Lottick, N., Zhu, L., Cox, C., Bordes-Edgar, V., Srivastava, D. K., et al. (2011). Predictors of independent living status in adult survivors of childhood cancer: A report from the childhood cancer survivor study. Pediatric Blood & Cancer, 57(7), 1197–1203. doi:10.1002/pbc.22982.

    Article  Google Scholar 

  34. Ness, K. K., Mertens, A. C., Hudson, M. M., Wall, M. M., Leisenring, W. M., Oeffinger, K. C., et al. (2005). Limitations on physical performance and daily activities among long-term survivors of childhood cancer. Annals of Internal Medicine, 143(9), 639–647.

    Article  PubMed  Google Scholar 

  35. Frobisher, C., Lancashire, E. R., Winter, D. L., Taylor, A. J., Reulen, R. C., & Hawkins, M. M. (2010). Long-term population-based divorce rates among adult survivors of childhood cancer in Britain. Pediatric Blood & Cancer, 54(1), 116–122. doi:10.1002/pbc.22290.

    Article  Google Scholar 

  36. van Dijk, E. M., van Dulmen-den, B. E., Kaspers, G. J., van Dam, E. W., Braam, K. I., & Huisman, J. (2008). Psychosexual functioning of childhood cancer survivors. Psychooncology, 17(5), 506–511. doi:10.1002/pon.1274.

    Article  PubMed  Google Scholar 

  37. McLean, C. P., & Anderson, E. R. (2009). Brave men and timid women? A review of the gender differences in fear and anxiety. Clinical Psychology Review, 29(6), 496–505. doi:10.1016/j.cpr.2009.05.003.

    Article  PubMed  Google Scholar 

  38. Piccinelli, M., & Wilkinson, G. (2000). Gender differences in depression. Critical review. The British Journal of Psychiatry, 177, 486–492.

    Article  PubMed  Google Scholar 

  39. Johnson, J. G., Cohen, P., Dohrenwend, B. P., Link, B. G., & Brook, J. S. (1999). A longitudinal investigation of social causation and social selection processes involved in the association between socioeconomic status and psychiatric disorders. Journal of Abnormal Psychology, 108(3), 490–499.

    Article  PubMed  Google Scholar 

  40. Ness, K. K., Gurney, J. G., Zeltzer, L. K., Leisenring, W., Mulrooney, D. A., Nathan, P. C., et al. (2008). 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. Archives of Physical Medicine and Rehabilitation, 89(1), 128–136.

    Article  PubMed  Google Scholar 

  41. Speechley, K. N., Barrera, M., Shaw, A. K., Morrison, H. I., & Maunsell, E. (2006). Health-related quality of life among child and adolescent survivors of childhood cancer. Journal of Clinical Oncology, 24(16), 2536–2543.

    Article  PubMed  Google Scholar 

  42. Zebrack, B. J., Zeltzer, L. K., Whitton, J., Mertens, A. C., Odom, L., Berkow, R., et al. (2002). 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, 110(1 Pt 1), 42–52.

    Article  PubMed  Google Scholar 

  43. Schultz, K. A., Ness, K. K., Whitton, J., Recklitis, C., Zebrack, B., Robison, L. L., et al. (2007). Behavioral and social outcomes in adolescent survivors of childhood cancer: A report from the childhood cancer survivor study. Journal of Clinical Oncology, 25(24), 3649–3656.

    Article  PubMed  Google Scholar 

  44. Casey, R., Zwemer, E., & Recklitis, C. Is survivor identity associated with physical and behavioral health? Results from Project REACH. Presented at 5th Biennial Cancer Survivorship Research Conference. Washington, DC, 2010.

    Google Scholar 

  45. Zebrack, B. J., Gurney, J. G., Oeffinger, K., Whitton, J., Packer, R. J., Mertens, A., et al. (2004). Psychological outcomes in long-term survivors of childhood brain cancer: A report from the childhood cancer survivor study. Journal of Clinical Oncology, 22(6), 999–1006.

    Article  PubMed  Google Scholar 

  46. Rutka, J. T., & Kuo, J. S. (2004). Pediatric surgical neuro-oncology: Current best care practices and strategies. Journal of Neuro-Oncology, 69(1–3), 139–150.

    Article  PubMed  Google Scholar 

  47. Ris, M. D., & Beebe, D. W. (2008). Neurodevelopmental outcomes of children with low-grade gliomas. Developmental Disabilities Research Reviews, 14(3), 196–202.

    Article  PubMed  Google Scholar 

  48. Turner, C. D., Chordas, C. A., Liptak, C. C., Rey-Casserly, C., Delaney, B. L., Ullrich, N. J., et al. (2009). Medical, psychological, cognitive and educational late-effects in pediatric low-grade glioma survivors treated with surgery only. Pediatric Blood & Cancer, 53(3), 417–423.

    Article  Google Scholar 

  49. Poretti, A., Grotzer, M. A., Ribi, K., Schonle, E., & Boltshauser, E. (2004). Outcome of craniopharyngioma in children: Long-term complications and quality of life. Developmental Medicine and Child Neurology, 46(4), 220–229.

    Article  PubMed  Google Scholar 

  50. Langeveld, N. E., Ubbink, M. C., Last, B. F., Grootenhuis, M. A., Voute, P. A., & De Haan, R. J. (2003). Educational achievement, employment and living situation in long-term young adult survivors of childhood cancer in the Netherlands. Psychooncology, 12(3), 213–225.

    Article  PubMed  Google Scholar 

  51. Ullrich, N. J., Pomeroy, S. L., & Loddenkemper, T. (2009). Incidence and outcome of seizures in long-term survivors of pediatric brain tumors. Epilepsia, 50(11), 213–214.

    Google Scholar 

  52. Tellez-Zenteno, J. F., Patten, S. B., Jette, N., Williams, J., & Wiebe, S. (2007). Psychiatric comorbidity in epilepsy: A population-based analysis. Epilepsia, 48(12), 2336–2344. doi:10.1111/j.1528-1167.2007.01222.x.

    PubMed  Google Scholar 

  53. Clarke, S. A., Eiser, C., & Skinner, R. (2008). Health-related quality of life in survivors of BMT for paediatric malignancy: A systematic review of the literature. Bone Marrow Transplantation, 42(2), 73–82.

    Article  PubMed  Google Scholar 

  54. Barrera, M., & Atenafu, E. (2008). Cognitive, educational, psychosocial adjustment and quality of life of children who survive hematopoietic SCT and their siblings. Bone Marrow Transplantation, 42(1), 15–21.

    Article  PubMed  Google Scholar 

  55. Jobe-Shields, L., Alderfer, M. A., Barrera, M., Vannatta, K., Currier, J. M., & Phipps, S. (2009). Parental depression and family environment predict distress in children before stem cell transplantation. Journal of Developmental and Behavioral Pediatrics, 30(2), 140–146. doi:10.1097/DBP.0b013e3181976a59.

    Article  PubMed Central  PubMed  Google Scholar 

  56. Phipps, S., Dunavant, M., Lensing, S., & Rai, S. N. (2004). Patterns of distress in parents of children undergoing stem cell transplantation. Pediatric Blood & Cancer, 43(3), 267–274. doi:10.1002/pbc.20101.

    Article  Google Scholar 

  57. Sun, C. L., Francisco, L., Baker, K. S., Weisdorf, D. J., Forman, S. J., & Bhatia, S. (2011). Adverse psychological outcomes in long-term survivors of hematopoietic cell transplantation: A report from the bone marrow transplant survivor study (BMTSS). Blood, 118(17), 4723–4731. doi:10.1182/blood-2011-04-348730.

    Article  PubMed Central  PubMed  Google Scholar 

  58. Gift, A. G., Wood, R. M., & Cahill, C. A. (1989). Depression, somatization and steroid use in chronic obstructive pulmonary disease. International Journal of Nursing Studies, 26(3), 281–286.

    Article  PubMed  Google Scholar 

  59. Armenian, S. H., Sun, C. L., Kawashima, T., Arora, M., Leisenring, W., Sklar, C. A., et al. (2011). Long-term health-related outcomes in survivors of childhood cancer treated with HSCT versus conventional therapy: A report from the bone marrow transplant survivor study (BMTSS) and childhood cancer survivor study (CCSS). Blood, 118(5), 1413–1420.

    Article  PubMed Central  PubMed  Google Scholar 

  60. Erikson, E. H. (1968). Identity: Youth and crisis. Oxford: Norton & Co.

    Google Scholar 

  61. LAF. (2004). LIVESTRONG poll finds nearly half of people living with cancer feel their non-medical needs are unmet by their healthcare system. Retrieved July 14, 2005, from http://www.livestrong.org.

    Google Scholar 

  62. Detmar, S. B., Aaronson, N. K., Wever, L. D., Muller, M., & Schornagel, J. H. (2000). How are you feeling? Who wants to know? Patients’ and oncologists’ preferences for discussing health-related quality-of-life issues. Journal of Clinical Oncology, 18(18), 3295–3301.

    PubMed  Google Scholar 

  63. Greenberg, D. B. (2004). Barriers to the treatment of depression in cancer patients. Journal of the National Cancer Institute Monographs, 32, 127–135.

    Article  PubMed  Google Scholar 

  64. Johnson, L. C., Murphy, S. A., & Dimond, M. (1996). Reliability, construct validity, and subscale norms of the Brief Symptom Inventory when administered to bereaved parents. Journal of Nursing Measurement, 4(2), 117–127.

    PubMed  Google Scholar 

  65. Zabora, J., Brintzenhofeszoc, K., Jacobsen, P., Curbow, B., Piantadosi, S., Hooker, C., et al. (2001). A new psychosocial screening instrument for use with cancer patients. Psychosomatics, 42(3), 241–246.

    Article  PubMed  Google Scholar 

  66. Recklitis, C. J., & Rodriguez, P. (2007). Screening childhood cancer survivors with the brief symptom inventory-18: Classification agreement with the symptom checklist-90-revised. Psychooncology, 16(5), 429–436. doi:10.1002/pon.1069.

    Article  PubMed  Google Scholar 

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Correspondence to Christopher J. Recklitis Ph.D., M.P.H. .

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Recklitis, C.J., Liptak, C. (2015). Psychological Challenges and Adaptation in Long-Term Survivors of Childhood Cancer. In: Mucci, G., Torno, L. (eds) Handbook of Long Term Care of The Childhood Cancer Survivor. Specialty Topics in Pediatric Neuropsychology. Springer, Boston, MA. https://doi.org/10.1007/978-1-4899-7584-3_17

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