Survivors of childhood and adolescent cancer: life-long risks and responsibilities

Abstract

Survival rates for most paediatric cancers have improved at a remarkable pace over the past four decades. In developed countries, cure is now the probable outcome for most children and adolescents who are diagnosed with cancer: their 5-year survival rate approaches 80%. However, the vast majority of these cancer survivors will have at least one chronic health condition by 40 years of age. The burden of responsibility to understand the long-term morbidity and mortality that is associated with currently successful treatments must be borne by many, including the research and health care communities, survivor advocacy groups, and governmental and policy-making entities.

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Figure 1: Age-specific cancer incidence rates and survival rates.
Figure 2: Range of health-related and quality-of-life outcomes among long-term survivors of childhood and adolescent cancers.
Figure 3: Inter-relationships.
Figure 4: A theoretical framework.

References

  1. 1

    Howlader, N. et al. (eds) SEER Cancer Statistics Review, 1975–2010. National Cancer Institute. Bethesda, MD[online] (2013).

  2. 2

    Gajjar, A. et al. Children's Oncology Group's 2013 blueprint for research: central nervous system tumors. Pediatr. Blood Cancer 60, 1022–1026 (2013).

    PubMed  PubMed Central  Google Scholar 

  3. 3

    Norris, R. E. & Adamson, P. C. Challenges and opportunities in childhood cancer drug development. Nature Rev. Cancer 12, 776–782 (2012).

    CAS  Google Scholar 

  4. 4

    Pui, C. H., Carroll, W. L., Meshinchi, S. & Arceci, R. J. Biology, risk stratification, and therapy of pediatric acute leukemias: an update. J. Clin. Oncol. 29, 551–565 (2011).

    PubMed  PubMed Central  Google Scholar 

  5. 5

    Smith, M. A. et al. Outcomes for children and adolescents with cancer: challenges for the twenty-first century. J. Clin. Oncol. 28, 2625–2634 (2010).

    PubMed  PubMed Central  Google Scholar 

  6. 6

    Mariotto, A. B. et al. Long-term survivors of childhood cancers in the United States. Cancer Epidemiol. Biomarkers Prev. 18, 1033–1040 (2009).

    PubMed  PubMed Central  Google Scholar 

  7. 7

    Hudson, M. M. et al. Health status of adult long-term survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. JAMA 290, 1583–1592 (2003).

    CAS  Article  Google Scholar 

  8. 8

    Hudson, M. M. et al. Clinical ascertainment of health outcomes among adults treated for childhood cancer. JAMA 309, 2371–2381 (2013).

    CAS  PubMed  PubMed Central  Google Scholar 

  9. 9

    Oeffinger, K. C. et al. Chronic health conditions in adult survivors of childhood cancer. N. Engl. J. Med. 355, 1572–1582 (2006).

    CAS  PubMed  PubMed Central  Google Scholar 

  10. 10

    Sun, C. L. et al. Prevalence and predictors of chronic health conditions after hematopoietic cell transplantation: a report from the Bone Marrow Transplant Survivor Study. Blood 116, 3129–3139, (2010).

    CAS  PubMed  PubMed Central  Google Scholar 

  11. 11

    Tai, E. et al. Health status of adolescent and young adult cancer survivors. Cancer 118, 4884–4891 (2012).

    PubMed  PubMed Central  Google Scholar 

  12. 12

    Armstrong, G. T., Pan, Z., Ness, K. K., Srivastava, D. & Robison, L. L. Temporal trends in cause-specific late mortality among 5-year survivors of childhood cancer. J. Clin. Oncol. 28, 1224–1231 (2010).

    PubMed  PubMed Central  Google Scholar 

  13. 13

    Mertens, A. C. et al. Cause-specific late mortality among 5-year survivors of childhood cancer: the Childhood Cancer Survivor Study. J. Natl Cancer Inst. 100, 1368–1379 (2008).

    PubMed  PubMed Central  Google Scholar 

  14. 14

    Diller, L. et al. Chronic disease in the Childhood Cancer Survivor Study cohort: a review of published findings. J. Clin. Oncol. 27, 2339–2355 (2009).

    PubMed  PubMed Central  Google Scholar 

  15. 15

    Green, D. M. et al. Fertility of female survivors of childhood cancer: a report from the childhood cancer survivor study. J. Clin. Oncol. 27, 2677–2685 (2009).

    CAS  PubMed  PubMed Central  Google Scholar 

  16. 16

    Gurney, J. G. et al. Social outcomes in the Childhood Cancer Survivor Study cohort. J. Clin. Oncol. 27, 2390–2395 (2009).

    PubMed  PubMed Central  Google Scholar 

  17. 17

    Meadows, A. T. et al. Second neoplasms in survivors of childhood cancer: findings from the Childhood Cancer Survivor Study cohort. J. Clin. Oncol. 27, 2356–2362 (2009).

    PubMed  PubMed Central  Google Scholar 

  18. 18

    Ness, K. K. et al. Physical performance limitations in the Childhood Cancer Survivor Study cohort. J. Clin. Oncol. 27, 2382–2389 (2009).

    PubMed  PubMed Central  Google Scholar 

  19. 19

    Zeltzer, L. K. et al. Psychological status in childhood cancer survivors: a report from the Childhood Cancer Survivor Study. J. Clin. Oncol. 27, 2396–2404 (2009).

    PubMed  PubMed Central  Google Scholar 

  20. 20

    Hudson, M. M. et al. High-risk populations identified in Childhood Cancer Survivor Study investigations: implications for risk-based surveillance. J. Clin. Oncol. 27, 2405–2414 (2009).

    PubMed  PubMed Central  Google Scholar 

  21. 21

    Hudson, M. M. A model for care across the cancer continuum. Cancer 104, 2638–2642 (2005).

    PubMed  PubMed Central  Google Scholar 

  22. 22

    Green, D. M. et al. Relevance of historical therapeutic approaches to the contemporary treatment of pediatric solid tumors. Pediatr. Blood Cancer 60, 1083–1094 (2013).

    PubMed  PubMed Central  Google Scholar 

  23. 23

    Hudson, M. M. et al. Lessons from the past: opportunities to improve childhood cancer survivor care through outcomes investigations of historical therapeutic approaches for pediatric hematological malignancies. Pediatr. Blood Cancer 58, 334–343 (2012).

    PubMed  PubMed Central  Google Scholar 

  24. 24

    Armstrong, G. T., Stovall, M. & Robison, L. L. Long-term effects of radiation exposure among adult survivors of childhood cancer: results from the childhood cancer survivor study. Radiat. Res. 174, 840–850 (2010).

    CAS  PubMed  PubMed Central  Google Scholar 

  25. 25

    van Dijk, I. W. et al. Dose-effect relationships for adverse events after cranial radiation therapy in long-term childhood cancer survivors. Int. J. Radiat. Oncol. Biol. Phys. 85, 768–775 (2013).

    PubMed  PubMed Central  Google Scholar 

  26. 26

    Galper, S. L. et al. Clinically significant cardiac disease in patients with Hodgkin lymphoma treated with mediastinal irradiation. Blood 117, 412–418 (2011).

    CAS  PubMed  PubMed Central  Google Scholar 

  27. 27

    Schellong, G. et al. Late valvular and other cardiac diseases after different doses of mediastinal radiotherapy for Hodgkin disease in children and adolescents: report from the longitudinal GPOH follow-up project of the German-Austrian DAL-HD studies. Pediatr. Blood Cancer 55, 1145–1152 (2010).

    PubMed  PubMed Central  Google Scholar 

  28. 28

    Tukenova, M. et al. Role of cancer treatment in long-term overall and cardiovascular mortality after childhood cancer. J. Clin. Oncol. 28, 1308–1315 (2010).

    PubMed  PubMed Central  Google Scholar 

  29. 29

    van der Pal, H. J. et al. High risk of symptomatic cardiac events in childhood cancer survivors. J. Clin. Oncol. 30, 1429–1437 (2012).

    PubMed  PubMed Central  Google Scholar 

  30. 30

    Bowers, D. C. et al. Late-occurring stroke among long-term survivors of childhood leukemia and brain tumors: a report from the Childhood Cancer Survivor Study. J. Clin. Oncol. 24, 5277–5282 (2006).

    PubMed  PubMed Central  Google Scholar 

  31. 31

    Bowers, D. C. et al. Stroke as a late treatment effect of Hodgkin's Disease: a report from the Childhood Cancer Survivor Study. J. Clin. Oncol. 23, 6508–6515 (2005).

    PubMed  PubMed Central  Google Scholar 

  32. 32

    Morris, B. et al. Cerebrovascular disease in childhood cancer survivors: A Children's Oncology Group Report. Neurology 73, 1906–1913 (2009).

    CAS  PubMed  PubMed Central  Google Scholar 

  33. 33

    Chemaitilly, W. & Sklar, C. A. Endocrine complications in long-term survivors of childhood cancers. Endocr. Relat. Cancer 17, R141–R159 (2010).

    CAS  PubMed  PubMed Central  Google Scholar 

  34. 34

    de Vathaire, F. et al. Radiation dose to the pancreas and risk of diabetes mellitus in childhood cancer survivors: a retrospective cohort study. Lancet Oncol. 13, 1002–1010 (2012).

    PubMed  PubMed Central  Google Scholar 

  35. 35

    Laughton, S. J. et al. Endocrine outcomes for children with embryonal brain tumors after risk-adapted craniospinal and conformal primary-site irradiation and high-dose chemotherapy with stem-cell rescue on the SJMB-96 trial. J. Clin. Oncol. 26, 1112–1118 (2008).

    CAS  PubMed  PubMed Central  Google Scholar 

  36. 36

    Meacham, L. R. et al. Diabetes mellitus in long-term survivors of childhood cancer. Increased risk associated with radiation therapy: a report for the childhood cancer survivor study. Arch. Intern. Med. 169, 1381–1388 (2009).

    PubMed  PubMed Central  Google Scholar 

  37. 37

    Merchant, T. E. et al. Growth hormone secretion after conformal radiation therapy in pediatric patients with localized brain tumors. J. Clin. Oncol. 29, 4776–4780 (2011).

    CAS  PubMed  PubMed Central  Google Scholar 

  38. 38

    Patterson, B. C., Truxillo, L., Wasilewski-Masker, K., Mertens, A. C. & Meacham, L. R. Adrenal function testing in pediatric cancer survivors. Pediatr. Blood Cancer 53, 1302–1307 (2009).

    PubMed  PubMed Central  Google Scholar 

  39. 39

    Goldsby, R. et al. Survivors of childhood cancer have increased risk of gastrointestinal complications later in life. Gastroenterology 140, 1464–1471, e1 (2011).

    PubMed  PubMed Central  Google Scholar 

  40. 40

    Green, D. M. et al. Fertility of male survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. J. Clin. Oncol. 28, 332–339 (2010).

    PubMed  PubMed Central  Google Scholar 

  41. 41

    Kenney, L. B. et al. Male reproductive health after childhood, adolescent, and young adult cancers: a report from the Children's Oncology Group. J. Clin. Oncol. 30, 3408–3416 (2012).

    PubMed  PubMed Central  Google Scholar 

  42. 42

    Metzger, M. L. et al. Female reproductive health after childhood, adolescent, and young adult cancers: guidelines for the assessment and management of female reproductive complications. J. Clin. Oncol. 31, 1239–1247 (2013).

    PubMed  PubMed Central  Google Scholar 

  43. 43

    Signorello, L. B. et al. Female survivors of childhood cancer: preterm birth and low birth weight among their children. J. Natl Cancer Inst. 98, 1453–1461 (2006).

    PubMed  PubMed Central  Google Scholar 

  44. 44

    Signorello, L. B. et al. Stillbirth and neonatal death in relation to radiation exposure before conception: a retrospective cohort study. Lancet 376, 624–630 (2010).

    PubMed  PubMed Central  Google Scholar 

  45. 45

    Castellino, S. et al. Hepato-biliary late effects in survivors of childhood and adolescent cancer: a report from the Children's Oncology Group. Pediatr. Blood Cancer 54, 663–669 (2010).

    PubMed  PubMed Central  Google Scholar 

  46. 46

    Huang, T. T. et al. Pulmonary outcomes in survivors of childhood cancer: a systematic review. Chest 140, 881–901 (2011).

    PubMed  PubMed Central  Google Scholar 

  47. 47

    Mertens, A. C. et al. Pulmonary complications in survivors of childhood and adolescent cancer. A report from the Childhood Cancer Survivor Study. Cancer 95, 2431–2441 (2002).

    PubMed  PubMed Central  Google Scholar 

  48. 48

    Motosue, M. S. et al. Pulmonary function after whole lung irradiation in pediatric patients with solid malignancies. Cancer 118, 1450–1456 (2012).

    PubMed  PubMed Central  Google Scholar 

  49. 49

    Mulder, R. L. et al. Pulmonary function impairment measured by pulmonary function tests in long-term survivors of childhood cancer. Thorax 66, 1065–1071 (2011).

    PubMed  PubMed Central  Google Scholar 

  50. 50

    Dawson, L. A. et al. Radiation-associated kidney injury. Int. J. Radiat. Oncol. Biol. Phys. 76, S108–S115 (2010).

    PubMed  PubMed Central  Google Scholar 

  51. 51

    Jones, D. P., Spunt, S. L., Green, D. & Springate, J. E. Renal late effects in patients treated for cancer in childhood: a report from the Children's Oncology Group. Pediatr. Blood Cancer 51, 724–731 (2008).

    PubMed  PubMed Central  Google Scholar 

  52. 52

    Ritchey, M., Ferrer, F., Shearer, P. & Spunt, S. L. Late effects on the urinary bladder in patients treated for cancer in childhood: a report from the Children's Oncology Group. Pediatr. Blood Cancer 52, 439–446 (2009).

    PubMed  PubMed Central  Google Scholar 

  53. 53

    Estilo, C. L. et al. Effects of therapy on dentofacial development in long-term survivors of head and neck rhabdomyosarcoma: the memorial sloan-kettering cancer center experience. J. Pediatr. Hematol. Oncol. 25, 215–222 (2003).

    PubMed  PubMed Central  Google Scholar 

  54. 54

    Merchant, T. E. et al. Differential attenuation of clavicle growth after asymmetric mantle radiotherapy. Int. J. Radiat. Oncol. Biol. Phys. 59, 556–561 (2004).

    PubMed  PubMed Central  Google Scholar 

  55. 55

    Paulino, A. C. Late effects of radiotherapy for pediatric extremity sarcomas. Int. J. Radiat. Oncol. Biol. Phys. 60, 265–274 (2004).

    PubMed  PubMed Central  Google Scholar 

  56. 56

    Goldsby, R. E. et al. Late-occurring neurologic sequelae in adult survivors of childhood acute lymphoblastic leukemia: a report from the Childhood Cancer Survivor Study. J. Clin. Oncol. 28, 324–331 (2010).

    PubMed  PubMed Central  Google Scholar 

  57. 57

    Grewal, S. et al. Auditory late effects of childhood cancer therapy: a report from the Children's Oncology Group. Pediatrics 125, e938–e950 (2010).

    PubMed  PubMed Central  Google Scholar 

  58. 58

    Packer, R. J. et al. Long-term neurologic and neurosensory sequelae in adult survivors of a childhood brain tumor: childhood cancer survivor study. J. Clin. Oncol. 21, 3255–3261 (2003).

    PubMed  PubMed Central  Google Scholar 

  59. 59

    Whelan, K. et al. Auditory complications in childhood cancer survivors: a report from the childhood cancer survivor study. Pediatr. Blood Cancer 57, 126–134 (2011).

    PubMed  PubMed Central  Google Scholar 

  60. 60

    Whelan, K. F. et al. Ocular late effects in childhood and adolescent cancer survivors: a report from the childhood cancer survivor study. Pediatr. Blood Cancer 54, 103–109 (2010).

    PubMed  PubMed Central  Google Scholar 

  61. 61

    Winick, N. Neurocognitive outcome in survivors of pediatric cancer. Curr. Opin. Pediatr. 23, 27–33 (2011).

    PubMed  PubMed Central  Google Scholar 

  62. 62

    Armstrong, G. T. et al. Occurrence of multiple subsequent neoplasms in long-term survivors of childhood cancer: a report from the childhood cancer survivor study. J. Clin. Oncol. 29, 3056–3064 (2011).

    PubMed  PubMed Central  Google Scholar 

  63. 63

    Bassal, M. et al. Risk of selected subsequent carcinomas in survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. J. Clin. Oncol. 24, 476–483 (2006).

    PubMed  PubMed Central  Google Scholar 

  64. 64

    Bhatti, P. et al. Risk of second primary thyroid cancer after radiotherapy for a childhood cancer in a large cohort study: an update from the childhood cancer survivor study. Radiat. Res. 174, 741–752 (2010).

    CAS  PubMed  PubMed Central  Google Scholar 

  65. 65

    Boukheris, H. et al. Risk of salivary gland cancer after childhood cancer: a report from the Childhood Cancer Survivor Study. Int. J. Radiat. Oncol. Biol. Phys. 85, 776–783 (2013).

    PubMed  PubMed Central  Google Scholar 

  66. 66

    Friedman, D. L. et al. Subsequent neoplasms in 5-year survivors of childhood cancer: the Childhood Cancer Survivor Study. J. Natl Cancer Inst. 102, 1083–1095 (2010).

    PubMed  PubMed Central  Google Scholar 

  67. 67

    Henderson, T. O. et al. Secondary gastrointestinal cancer in childhood cancer survivors: a cohort study. Ann. Intern. Med. 156, 757–766 (2012).

    PubMed  PubMed Central  Google Scholar 

  68. 68

    Henderson, T. O. et al. Risk factors associated with secondary sarcomas in childhood cancer survivors: a report from the childhood cancer survivor study. Int. J. Radiat. Oncol. Biol. Phys. 84, 224–230 (2012).

    PubMed  PubMed Central  Google Scholar 

  69. 69

    Inskip, P. D. et al. Radiation dose and breast cancer risk in the childhood cancer survivor study. J. Clin. Oncol. 27, 3901–3907 (2009).

    PubMed  PubMed Central  Google Scholar 

  70. 70

    Neglia, J. P. et al. New primary neoplasms of the central nervous system in survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. J. Natl Cancer Inst. 98, 1528–1537 (2006).

    PubMed  PubMed Central  Google Scholar 

  71. 71

    Nottage, K. et al. Secondary colorectal carcinoma after childhood cancer. J. Clin. Oncol. 30, 2552–2558 (2012).

    PubMed  PubMed Central  Google Scholar 

  72. 72

    Pappo, A. S. et al. Melanoma as a subsequent neoplasm in adult survivors of childhood cancer: a report from the childhood cancer survivor study. Pediatr. Blood Cancer 60, 461–466 (2013).

    CAS  PubMed  PubMed Central  Google Scholar 

  73. 73

    Perkins, J. L. et al. Nonmelanoma skin cancer in survivors of childhood and adolescent cancer: a report from the childhood cancer survivor study. J. Clin. Oncol. 23, 3733–3741 (2005).

    PubMed  PubMed Central  Google Scholar 

  74. 74

    Reulen, R. C. et al. Long-term risks of subsequent primary neoplasms among survivors of childhood cancer. JAMA 305, 2311–2319 (2011).

    CAS  PubMed  PubMed Central  Google Scholar 

  75. 75

    Ronckers, C. M. et al. Thyroid cancer in childhood cancer survivors: a detailed evaluation of radiation dose response and its modifiers. Radiat. Res. 166, 618–628 (2006).

    CAS  PubMed  PubMed Central  Google Scholar 

  76. 76

    Tukenova, M. et al. Second malignant neoplasms in digestive organs after childhood cancer: a cohort-nested case-control study. Int. J. Radiat. Oncol. Biol. Phys. 82, e383–e390 (2012).

    PubMed  PubMed Central  Google Scholar 

  77. 77

    De Bruin, M. L. et al. Breast cancer risk in female survivors of Hodgkin's lymphoma: lower risk after smaller radiation volumes. J. Clin. Oncol. 27, 4239–4246 (2009).

    PubMed  PubMed Central  Google Scholar 

  78. 78

    Swerdlow, A. J. et al. Breast cancer risk after supradiaphragmatic radiotherapy for Hodgkin's lymphoma in England and Wales: a National Cohort Study. J. Clin. Oncol. 30, 2745–2752 (2012).

    PubMed  PubMed Central  Google Scholar 

  79. 79

    Sigurdson, A. J. et al. Primary thyroid cancer after a first tumour in childhood (the Childhood Cancer Survivor Study): a nested case-control study. Lancet 365, 2014–2023 (2005).

    PubMed  PubMed Central  Google Scholar 

  80. 80

    Bowers, D. C. et al. Subsequent neoplasms of the CNS among survivors of childhood cancer: a systematic review. Lancet Oncol. 14, e321–e328 (2013).

    PubMed  PubMed Central  Google Scholar 

  81. 81

    Taylor, A. J. et al. Population-based risks of CNS tumors in survivors of childhood cancer: the British Childhood Cancer Survivor Study. J. Clin. Oncol. 28, 5287–5293 (2010).

    PubMed  PubMed Central  Google Scholar 

  82. 82

    Wilson, C. L. et al. Renal carcinoma after childhood cancer: a report from the childhood cancer survivor study. J. Natl Cancer Inst. 105, 504–508 (2013).

    PubMed  PubMed Central  Google Scholar 

  83. 83

    Ibrahim, E. M. et al. Increased risk of second lung cancer in Hodgkin's lymphoma survivors: a meta-analysis. Lung 191, 117–134 (2013).

    CAS  PubMed  PubMed Central  Google Scholar 

  84. 84

    Brock, P. R. et al. Platinum-induced ototoxicity in children: a consensus review on mechanisms, predisposition, and protection, including a new International Society of Pediatric Oncology Boston ototoxicity scale. J. Clin. Oncol. 30, 2408–2417 (2012).

    CAS  PubMed  PubMed Central  Google Scholar 

  85. 85

    Feldman, D. R., Schaffer, W. L. & Steingart, R. M. Late cardiovascular toxicity following chemotherapy for germ cell tumors. J. Natl Compr. Canc. Netw. 10, 537–544 (2012).

    CAS  PubMed  PubMed Central  Google Scholar 

  86. 86

    Hijiya, N., Ness, K. K., Ribeiro, R. C. & Hudson, M. M. Acute leukemia as a secondary malignancy in children and adolescents: current findings and issues. Cancer 115, 23–35 (2009).

    CAS  PubMed  PubMed Central  Google Scholar 

  87. 87

    Skinner, R. Nephrotoxicity — what do we know and what don't we know? J. Pediatr. Hematol. Oncol. 33, 128–134 (2011).

    PubMed  PubMed Central  Google Scholar 

  88. 88

    Lipshultz, S. E. et al. Chronic progressive cardiac dysfunction years after doxorubicin therapy for childhood acute lymphoblastic leukemia. J. Clin. Oncol. 23, 2629–2636 (2005).

    CAS  PubMed  PubMed Central  Google Scholar 

  89. 89

    Mulrooney, D. A. et al. Cardiac outcomes in a cohort of adult survivors of childhood and adolescent cancer: retrospective analysis of the Childhood Cancer Survivor Study cohort. BMJ 339, b4606 (2009).

    PubMed  PubMed Central  Google Scholar 

  90. 90

    Wasilewski-Masker, K. et al. Bone mineral density deficits in survivors of childhood cancer: long-term follow-up guidelines and review of the literature. Pediatrics 121, e705–e713 (2008).

    PubMed  PubMed Central  Google Scholar 

  91. 91

    Kadan-Lottick, N. S. et al. Osteonecrosis in adult survivors of childhood cancer: a report from the childhood cancer survivor study. J. Clin. Oncol. 26, 3038–3045 (2008).

    PubMed  PubMed Central  Google Scholar 

  92. 92

    Jain, P. et al. Vincristine-induced neuropathy in childhood ALL (acute lymphoblastic leukemia) survivors: prevalence and electrophysiological characteristics. J. Child Neurol. http://dx.doi.org/10.1177/0883073813491829 (2013).

  93. 93

    Ness, K. K. et al. Chemotherapy-related neuropathic symptoms and functional impairment in adult survivors of extracranial solid tumors of childhood: results from the st. Jude lifetime cohort study. Arch. Phys. Med. Rehabil. 94, 1451–1457 (2013).

    PubMed  PubMed Central  Google Scholar 

  94. 94

    Bhatia, S. Role of genetic susceptibility in development of treatment-related adverse outcomes in cancer survivors. Cancer Epidemiol. Biomarkers Prev. 20, 2048–2067 (2011).

    PubMed  PubMed Central  Google Scholar 

  95. 95

    Oeffinger, K. C. & Hudson, M. M. Long-term complications following childhood and adolescent cancer: foundations for providing risk-based health care for survivors. CA Cancer J. Clin. 54, 208–236 (2004).

    PubMed  PubMed Central  Google Scholar 

  96. 96

    Barr, R. D. & Wunder, J. S. Bone and soft tissue sarcomas are often curable — but at what cost?: a call to arms (and legs). Cancer 115, 4046–4054 (2009).

    PubMed  PubMed Central  Google Scholar 

  97. 97

    Lin, H. Y. & Liao, S. L. Orbital development in survivors of retinoblastoma treated by enucleation with hydroxyapatite implant. Br. J. Ophthalmol. 95, 630–633 (2011).

    PubMed  PubMed Central  Google Scholar 

  98. 98

    Turner, C. D. et al. Medical, psychological, cognitive and educational late-effects in pediatric low-grade glioma survivors treated with surgery only. Pediatr. Blood Cancer 53, 417–423 (2009).

    PubMed  PubMed Central  Google Scholar 

  99. 99

    Kinahan, K. E. 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. 30, 2466–2474 (2012).

    PubMed  PubMed Central  Google Scholar 

  100. 100

    Henderson, T. O. et al. Systematic review: surveillance for breast cancer in women treated with chest radiation for childhood, adolescent, or young adult cancer. Ann. Intern. Med. 152, 444–455 (2010).

    PubMed  PubMed Central  Google Scholar 

  101. 101

    Pui, C. H. Prophylactic cranial irradiation: going, going, gone. Lancet Oncol. 10, 932–933 (2009).

    PubMed  PubMed Central  Google Scholar 

  102. 102

    Hodgson, D. C., Hudson, M. M. & Constine, L. S. Pediatric hodgkin lymphoma: maximizing efficacy and minimizing toxicity. Semin. Radiat. Oncol. 17, 230–242 (2007).

    PubMed  PubMed Central  Google Scholar 

  103. 103

    Lund, L. W., Schmiegelow, K., Rechnitzer, C. & Johansen, C. A systematic review of studies on psychosocial late effects of childhood cancer: structures of society and methodological pitfalls may challenge the conclusions. Pediatr. Blood Cancer 56, 532–543 (2011).

    PubMed  PubMed Central  Google Scholar 

  104. 104

    Nathan, P. C. et al. Guidelines for identification of, advocacy for, and intervention in neurocognitive problems in survivors of childhood cancer: a report from the Children's Oncology Group. Arch. Pediatr. Adolesc. Med. 161, 798–806 (2007).

    PubMed  PubMed Central  Google Scholar 

  105. 105

    Wakefield, C. E. et al. The psychosocial impact of completing childhood cancer treatment: a systematic review of the literature. J. Pediatr. Psychol. 35, 262–274 (2010).

    PubMed  PubMed Central  Google Scholar 

  106. 106

    Kirchhoff, A. C. et al. Occupational outcomes of adult childhood cancer survivors: a report from the childhood cancer survivor study. Cancer 117, 3033–3044 (2011).

    PubMed  PubMed Central  Google Scholar 

  107. 107

    Kuehni, C. E. et al. Educational achievement in Swiss childhood cancer survivors compared with the general population. Cancer 118, 1439–1449 (2012).

    PubMed  PubMed Central  Google Scholar 

  108. 108

    Lancashire, E. R. et al. Educational attainment among adult survivors of childhood cancer in Great Britain: a population-based cohort study. J. Natl Cancer Inst. 102, 254–270 (2010).

    CAS  PubMed  PubMed Central  Google Scholar 

  109. 109

    Mitby, P. A. et al. Utilization of special education services and educational attainment among long-term survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Cancer 97, 1115–1126 (2003).

    PubMed  PubMed Central  Google Scholar 

  110. 110

    Kirchhoff, A. C. et al. Employer-sponsored health insurance coverage limitations: results from the Childhood Cancer Survivor Study. Support Care Cancer 21, 377–383 (2013).

    PubMed  PubMed Central  Google Scholar 

  111. 111

    Park, E. R. et al. Health insurance coverage in survivors of childhood cancer: the Childhood Cancer Survivor Study. J. Clin. Oncol. 23, 9187–9197 (2005).

    PubMed  PubMed Central  Google Scholar 

  112. 112

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

    CAS  PubMed  PubMed Central  Google Scholar 

  113. 113

    Frobisher, C. et al. Long-term population-based divorce rates among adult survivors of childhood cancer in Britain. Pediatr. Blood Cancer 54, 116–122 (2010).

    PubMed  PubMed Central  Google Scholar 

  114. 114

    Janson, C. et al. Predictors of marriage and divorce in adult survivors of childhood cancers: a report from the Childhood Cancer Survivor Study. Cancer Epidemiol. Biomarkers Prev. 18, 2626–2635 (2009).

    PubMed  PubMed Central  Google Scholar 

  115. 115

    Brinkman, T. M. et al. Longitudinal patterns of psychological distress in adult survivors of childhood cancer. Br. J. Cancer 109, 1373–1381 (2013).

    CAS  PubMed  PubMed Central  Google Scholar 

  116. 116

    Zebrack, B. J. et al. Psychological outcomes in long-term survivors of childhood brain cancer: a report from the Childhood Cancer Survivor Study. J. Clin. Oncol. 22, 999–1006 (2004).

    PubMed  PubMed Central  Google Scholar 

  117. 117

    Zebrack, B. J. 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 110, 42–52 (2002).

    PubMed  PubMed Central  Google Scholar 

  118. 118

    Kwak, M. et al. Trajectories of psychological distress in adolescent and young adult patients with cancer: a 1-year longitudinal study. J. Clin. Oncol. 31, 2160–2166 (2013).

    PubMed  PubMed Central  Google Scholar 

  119. 119

    Stuber, M. L. et al. Prevalence and predictors of posttraumatic stress disorder in adult survivors of childhood cancer. Pediatrics 125, e1124–e1134 (2010).

    PubMed  PubMed Central  Google Scholar 

  120. 120

    Zebrack, B. J. et al. Perceived positive impact of cancer among long-term survivors of childhood cancer: a report from the childhood cancer survivor study. Psychooncology 21, 630–639 (2012).

    PubMed  PubMed Central  Google Scholar 

  121. 121

    Clanton, N. R. et al. Fatigue, vitality, sleep, and neurocognitive functioning in adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Cancer 117, 2559–2568 (2011).

    PubMed  PubMed Central  Google Scholar 

  122. 122

    Meeske, K. A., Siegel, S. E., Globe, D. R., Mack, W. J. & Bernstein, L. Prevalence and correlates of fatigue in long-term survivors of childhood leukemia. J. Clin. Oncol. 23, 5501–5510 (2005).

    PubMed  PubMed Central  Google Scholar 

  123. 123

    Mulrooney, D. A. et al. Fatigue and sleep disturbance in adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study (CCSS). Sleep 31, 271–281 (2008).

    PubMed  PubMed Central  Google Scholar 

  124. 124

    Lu, Q. et al. Pain in long-term adult survivors of childhood cancers and their siblings: a report from the Childhood Cancer Survivor Study. Pain 152, 2616–2624 (2011).

    PubMed  PubMed Central  Google Scholar 

  125. 125

    Schultz, K. A. et al. Behavioral and social outcomes in adolescent survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. J. Clin. Oncol. 25, 3649–3656 (2007).

    PubMed  PubMed Central  Google Scholar 

  126. 126

    Robison, L. L. et al. The Childhood Cancer Survivor Study: a National Cancer Institute-supported resource for outcome and intervention research. J. Clin. Oncol. 27, 2308–2318 (2009).

    PubMed  PubMed Central  Google Scholar 

  127. 127

    Hawkins, M. M. et al. The British Childhood Cancer Survivor Study: objectives, methods, population structure, response rates and initial descriptive information. Pediatr. Blood Cancer 50, 1018–1025 (2008).

    CAS  PubMed  PubMed Central  Google Scholar 

  128. 128

    Menu-Branthomme, A. et al. Radiation dose, chemotherapy and risk of soft tissue sarcoma after solid tumours during childhood. Int. J. Cancer 110, 87–93 (2004).

    CAS  PubMed  PubMed Central  Google Scholar 

  129. 129

    Hawkins, M. M. & Robison, L. L. Importance of clinical and epidemiological research in defining the long-term clinical care of pediatric cancer survivors. Pediatr. Blood Cancer 46, 174–178 (2006).

    PubMed  PubMed Central  Google Scholar 

  130. 130

    Leisenring, W. M. et al. Pediatric cancer survivorship research: experience of the Childhood Cancer Survivor Study. J. Clin. Oncol. 27, 2319–2327 (2009).

    PubMed  PubMed Central  Google Scholar 

  131. 131

    Hudson, M. M. 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 56, 825–836 (2011).

    PubMed  PubMed Central  Google Scholar 

  132. 132

    Sieswerda, E. et al. The EKZ/AMC childhood cancer survivor cohort: methodology, clinical characteristics, and data availability. J. Cancer Surviv 7, 439–454 (2013).

    CAS  PubMed  PubMed Central  Google Scholar 

  133. 133

    Geenen, M. M. et al. Medical assessment of adverse health outcomes in long-term survivors of childhood cancer. JAMA 297, 2705–2715 (2007).

    CAS  PubMed  Google Scholar 

  134. 134

    Landier, W. et al. Yield of screening for long-term complications using the children's oncology group long-term follow-up guidelines. J. Clin. Oncol. 30, 4401–4408 (2012).

    PubMed  PubMed Central  Google Scholar 

  135. 135

    In Dutch Childhood Oncology Group, Richtlijn follow-up na kinderkanker meer dan 5 jaar na diagnose. SKION, Den Haag/Amsterdam [online], (2010).

  136. 136

    In Scottish Intercollegiate Guidelines Network, Long term follow up care of survivors of childhood cancer. A national clinical guideline [online], (2004).

  137. 137

    In United Kingdom Children's Cancer Study Group, Late Effects Group, Therapy based long term follow up practice statement [online], (2011).

  138. 138

    In Children's Oncology Group, Long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers. Version 3.0 [online], (2008).

  139. 139

    Nathan, P. C. et al. Family physician preferences and knowledge gaps regarding the care of adolescent and young adult survivors of childhood cancer. J. Cancer Surviv 7, 275–282 (2013).

    PubMed  PubMed Central  Google Scholar 

  140. 140

    Staba Hogan, M. J., Ma, X. & Kadan-Lottick, N. S. New health conditions identified at a regional childhood cancer survivor clinic visit. Pediatr. Blood Cancer 60, 682–687 (2013).

    PubMed  PubMed Central  Google Scholar 

  141. 141

    Wasilewski-Masker, K., Mertens, A. C., Patterson, B. & Meacham, L. R. Severity of health conditions identified in a pediatric cancer survivor program. Pediatr. Blood Cancer 54, 976–982 (2010).

    PubMed  PubMed Central  Google Scholar 

  142. 142

    Kremer, L. C. et al. A worldwide collaboration to harmonize guidelines for the long-term follow-up of childhood and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group. Pediatr. Blood Cancer 60, 543–549 (2013).

    PubMed  PubMed Central  Google Scholar 

  143. 143

    Hudson, M. M. et al. Multi-component behavioral intervention to promote health protective behaviors in childhood cancer survivors: the protect study. Med. Pediatr. Oncol. 39, 2–11 (discussion 2) (2002).

    PubMed  PubMed Central  Google Scholar 

  144. 144

    Kadan-Lottick, N. S. et al. Childhood cancer survivors' knowledge about their past diagnosis and treatment: Childhood Cancer Survivor Study. JAMA 287, 1832–1839 (2002).

    PubMed  Google Scholar 

  145. 145

    Wilkins, K. L. & Woodgate, R. L. Preventing second cancers in cancer survivors. Oncol. Nurs. Forum 35, E12–E22 (2008).

    PubMed  PubMed Central  Google Scholar 

  146. 146

    Oeffinger, K. C. et al. Increasing rates of breast cancer and cardiac surveillance among high-risk survivors of childhood Hodgkin lymphoma following a mailed, one-page survivorship care plan. Pediatr. Blood Cancer 56, 818–824 (2011).

    PubMed  PubMed Central  Google Scholar 

  147. 147

    Hinkle, A. S. et al. A clinic-based, comprehensive care model for studying late effects in long-term survivors of pediatric illnesses. Pediatrics 113, 1141–1145 (2004).

    PubMed  PubMed Central  Google Scholar 

  148. 148

    Kenney, L. B. et al. The current status of follow-up services for childhood cancer survivors, are we meeting goals and expectations: a report from the Consortium for New England Childhood Cancer Survivors. Pediatr. Blood Cancer 57, 1062–1066 (2011).

    PubMed  PubMed Central  Google Scholar 

  149. 149

    Ford, J. S., Chou, J. F. & Sklar, C. A. Attendance at a survivorship clinic: impact on knowledge and psychosocial adjustment. J. Cancer Surviv http://dx.doi.org/10.1007/s11764-013-0291-9 (2013).

  150. 150

    Klosky, J. L. et al. Factors influencing long-term follow-up clinic attendance among survivors of childhood cancer. J. Cancer Surviv 2, 225–232 (2008).

    PubMed  PubMed Central  Google Scholar 

  151. 151

    Hewitt, M., Greenfield, S. & Stovall, E. (eds) From Cancer Patient to Cancer Survivor: Lost in Transition (National Academies Press, 2006).

  152. 152

    Henderson, T. O., Hlubocky, F. J., Wroblewski, K. E., Diller, L. & Daugherty, C. K. Physician preferences and knowledge gaps regarding the care of childhood cancer survivors: a mailed survey of pediatric oncologists. J. Clin. Oncol. 28, 878–883 (2010).

    PubMed  PubMed Central  Google Scholar 

  153. 153

    Blaauwbroek, R., Tuinier, W., Meyboom-de Jong, B., Kamps, W. A. & Postma, A. Shared care by paediatric oncologists and family doctors for long-term follow-up of adult childhood cancer survivors: a pilot study. Lancet Oncol. 9, 232–238 (2008).

    PubMed  PubMed Central  Google Scholar 

  154. 154

    In Advisory Board Company, Survivorship [online], (2008).

  155. 155

    Eshelman-Kent, D. et al. Cancer survivorship practices, services, and delivery: a report from the Children's Oncology Group (COG) nursing discipline, adolescent/young adult, and late effects committees. J. Cancer Surviv 5, 345–357 (2011).

    PubMed  PubMed Central  Google Scholar 

  156. 156

    Oeffinger, K. C. & McCabe, M. S. Models for delivering survivorship care. J. Clin. Oncol. 24, 5117–5124 (2006).

    PubMed  PubMed Central  Google Scholar 

  157. 157

    The Patient Protection and Affordable Care Act. Public Law 111–148, (2010).

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Acknowledgements

Research grant support: L.L.R. and M.M.H. are supported in part by the Cancer Center Support (CORE) grant CA 21765 from the US National Cancer Institute and by the American Lebanese Syrian Associated Charities (ALSAC).

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Correspondence to Leslie L. Robison.

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Robison, L., Hudson, M. Survivors of childhood and adolescent cancer: life-long risks and responsibilities. Nat Rev Cancer 14, 61–70 (2014). https://doi.org/10.1038/nrc3634

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