The Cost of Cure: Chronic Conditions in Survivors of Child, Adolescent, and Young Adult Cancers

  • Christina Signorelli
  • Joanna E. Fardell
  • Claire E. Wakefield
  • Kate Webber
  • Richard J. Cohn
Chapter

Abstract

Few children and young adults with cancer have a pre-existing chronic condition which contributes to their cancer risk, highlighting the unique aetiology of most cancers in this age group. Children and adolescents often tolerate acute cancer treatments well, however, the majority will experience life-altering, and some even life-threatening, conditions as a result of the cancer treatments they received. Young people face particular challenges, due to significant disruptions to a developmentally important time of life, placing them at higher risk of physical and psychological conditions. Many chronic conditions related to cancer treatment do not appear until children and adolescents mature, years to decades after completion of treatment. Available data highlights the high prevalence and severe nature of treatment-related conditions, supporting the need for continuing management through long-term follow-up care well into adult life. Both survivors and health care professionals must be knowledgeable about the risk of chronic conditions in survivors of child, adolescent and young adult cancers and must be aware of the appropriate follow-up care aimed at their prevention and management. Knowledge of late complications also informs modification of new treatment, helping to avoid chronic conditions in future survivors. Researchers’ efforts should be focused on the development of strategies to reduce the potential burden of chronic conditions in this vulnerable population.

Keywords

Chronic illness Childhood cancer Adolescent Young adults Survivorship 

Notes

Acknowledgments

The Behavioural Sciences Unit (BSU) is proudly supported by the Kids with Cancer Foundation. The BSU’s survivorship research program is funded by the Kids Cancer Project and a Cancer Council NSW Program Grant PG16-02 with the support of the Estate of the Late Harry McPaul. Claire Wakefield is supported by a Career Development Fellowship from the National Health and Medical Research Council of Australia (APP1067501). Christina Signorelli is supported by a PhD scholarship from The Kids Cancer Project.

References

  1. 1.
    D’Angio GJ (1975) Pediatric cancer in perspective: cure is not enough. Cancer 35(S3):866–870PubMedCrossRefGoogle Scholar
  2. 2.
    Ganz PA (2014) Cancer survivors: a look backward and forward. Journal of Oncology Practice:JOP. 2014:001552Google Scholar
  3. 3.
    Balis FM (1997) The challenge of developing new therapies for childhood cancers. Oncologist 2(1):1–1Google Scholar
  4. 4.
    Ward E, DeSantis C, Robbins A, Kohler B, Jemal A (2014) Childhood and adolescent cancer statistics, 2014. CA Cancer J Clin 64(2):83–103PubMedCrossRefGoogle Scholar
  5. 5.
    Youlden D, Baade P, Ward L, Valery P, Hassall T, Green A, Aitken J (2010) Childhood cancer survival in Australia, 1995–2004. Viertel Centre for Research in Cancer Control, Cancer Council Queensland and the Australian Paediatric Cancer Registry, Brisbane, QueenslandGoogle Scholar
  6. 6.
    Smith MA, Seibel NL, Altekruse SF, Ries LA, Melbert DL, O’Leary M, Smith FO, Reaman GH (2010) Outcomes for children and adolescents with cancer: challenges for the twenty-first century. J Clin Oncol 28(15):2625–2634PubMedPubMedCentralCrossRefGoogle Scholar
  7. 7.
    Robison LL, Hudson MM (2014) Survivors of childhood and adolescent cancer: life-long risks and responsibilities. Nat Rev Cancer 14(1):61–70PubMedCrossRefGoogle Scholar
  8. 8.
    International Agency for Research on Cancer (2014) World cancer report 2014. WHO, GenevaGoogle Scholar
  9. 9.
    Siegel R, Naishadham D, Jemal A (2012) Cancer statistics, 2012. CA Cancer J Clin 62(1):10–29PubMedCrossRefGoogle Scholar
  10. 10.
    Pizzo PA, Poplack DG, Adamson PC, Blaney SM, Helman LJ (2006) Principles and practice of pediatric oncology. Lippincott Williams & Wilkins Philadelphia, PAGoogle Scholar
  11. 11.
    Zhang J, Walsh MF, Wu G, Edmonson MN, Gruber TA, Easton J, Hedges D, Ma X, Zhou X, Yergeau DA (2015) Germline mutations in predisposition genes in pediatric cancer. N Engl J Med 373(24):2336–2346PubMedPubMedCentralCrossRefGoogle Scholar
  12. 12.
    Simone JV, Weiner SL, Hewitt M (2003) Childhood cancer survivorship: improving care and quality of Life. National Academies PressGoogle Scholar
  13. 13.
    Bleyer A, Barr R, Hayes-Lattin B, Thomas D, Ellis C, Anderson B (2008) The distinctive biology of cancer in adolescents and young adults. Nat Rev Cancer 8(4):288–298PubMedCrossRefGoogle Scholar
  14. 14.
    Pizzo PA, Poplack DG (2015) Principles and practice of pediatric oncology. Wolters Kluwer HealthGoogle Scholar
  15. 15.
    Dieluweit U, Debatin K-M, Grabow D, Kaatsch P, Peter R, Seitz DCM, Goldbeck L (2011) Educational and vocational achievement among long-term survivors of adolescent cancer in Germany. Pediatr Blood Cancer 56(3):432–438. doi: 10.1002/pbc.22806 PubMedCrossRefGoogle Scholar
  16. 16.
    Prasad PK, Hardy KK, Zhang N, Edelstein K, Srivastava D, Zeltzer L, Stovall M, Seibel NL, Leisenring W, Armstrong GT, Robison LL, Krull K (2015) Psychosocial and neurocognitive outcomes in adult survivors of adolescent and early young adult cancer: a report from the childhood cancer survivor study. J Clin Oncol 33(23):2545–2552PubMedPubMedCentralCrossRefGoogle Scholar
  17. 17.
    Stinson JN, Jibb LA, Greenberg M, Barrera M, Luca S, White ME, Gupta A (2015) A qualitative study of the impact of cancer on romantic relationships, sexual relationships, and fertility: perspectives of canadian adolescents and parents during and after treatment. J Adolesc Young Adult Oncol 4(2):84–90PubMedCrossRefGoogle Scholar
  18. 18.
    Schultz KAP, Ness KK, Whitton J, Recklitis C, Zebrack B, Robison LL, Zeltzer L, Mertens AC (2007) Behavioral and social outcomes in adolescent survivors of childhood cancer: a report from the childhood cancer survivor study. J Clin Oncol 25(24):3649–3656PubMedCrossRefGoogle Scholar
  19. 19.
    Zhang Y, Goddard K, Spinelli JJ, Gotay C, McBride ML (2012) Risk of late mortality and second malignant neoplasms among 5-year survivors of young adult cancer: a report of the childhood, adolescent, and young adult cancer survivors research program. J Cancer EpidemiolGoogle Scholar
  20. 20.
    Hudson MM, Ness KK, Gurney JG et al (2013) Clinical ascertainment of health outcomes among adults treated for childhood cancer. JAMA 309(22):2371–2381. doi: 10.1001/jama.2013.6296 PubMedPubMedCentralCrossRefGoogle Scholar
  21. 21.
    Armenian SH, Hudson MM, Mulder RL, Chen MH, Constine LS, Dwyer M, Nathan PC, Tissing WJ, Shankar S, Sieswerda E (2015) Recommendations for cardiomyopathy surveillance for survivors of childhood cancer: a report from the international late effects of childhood cancer guideline harmonization group. Lancet Oncol 16(3):e123–e136PubMedPubMedCentralCrossRefGoogle Scholar
  22. 22.
    Landier W, Bhatia S, Eshelman DA, Forte KJ, Sweeney T, Hester AL, Darling J, Armstrong FD, Blatt J, Constine LS (2004) 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 22(24):4979–4990PubMedCrossRefGoogle Scholar
  23. 23.
    Metzger ML, Meacham LR, Patterson B, Casillas JS, Constine LS, Hijiya N, Kenney LB, Leonard M, Lockart BA, Likes W (2013) Female reproductive health after childhood, adolescent, and young adult cancers: guidelines for the assessment and management of female reproductive complications. J Clin Oncol 31(9):1239–1247PubMedPubMedCentralCrossRefGoogle Scholar
  24. 24.
    Nathan PC, Patel SK, Dilley K et al (2007) 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(8):798–806. doi: 10.1001/archpedi.161.8.798 PubMedCrossRefGoogle Scholar
  25. 25.
    Robison LL, Mertens AC, Boice JD, Breslow NE, Donaldson SS, Green DM, Li FP, Meadows AT, Mulvihill JJ, Neglia JP (2002) Study design and cohort characteristics of the childhood cancer survivor study: a multi-institutional collaborative project. Med Pediatr Oncol 38(4):229–239PubMedCrossRefGoogle Scholar
  26. 26.
    Winther JF, Kenborg L, Byrne J, Hjorth L, Kaatsch P, Kremer LC, Kuehni CE, Auquier P, Michel G, de Vathaire F (2015) Childhood cancer survivor cohorts in Europe. Acta Oncol 54(5):655–668PubMedCrossRefGoogle Scholar
  27. 27.
    Oeffinger KC, McCabe MS (2006) Models for delivering survivorship care. J Clin Oncol 24(32):5117–5124PubMedCrossRefGoogle Scholar
  28. 28.
    Siegel R, DeSantis C, Virgo K, Stein K, Mariotto A, Smith T, Cooper D, Gansler T, Lerro C, Fedewa S (2012) Cancer treatment and survivorship statistics. CA Cancer J Clin 62(4):220–241PubMedCrossRefGoogle Scholar
  29. 29.
    Stein KD, Syrjala KL, Andrykowski MA (2008) Physical and psychological long-term and late effects of cancer. Cancer 112(S11):2577–2592PubMedCrossRefGoogle Scholar
  30. 30.
    Hudson MM, Ness KK, Gurney JG, Mulrooney DA, Chemaitilly W, Krull KR, Green DM, Armstrong GT, Nottage KA, Jones KE (2013) Clinical ascertainment of health outcomes among adults treated for childhood cancer. JAMA 309(22):2371–2381PubMedPubMedCentralCrossRefGoogle Scholar
  31. 31.
    Children’s Oncology Group (2013) Long-term follow-up guidelines for survivors of childhood, adolescent and young adult cancers, version 4.0 Monrovia. Children’s Oncology Group, CA, Oct 2013; Available online: www.survivorshipguidelines.org
  32. 32.
    Oeffinger KC, Hudson MM, Landier W (2009) Survivorship: childhood cancer survivors. Prim Care 36(4):743–780PubMedCrossRefGoogle Scholar
  33. 33.
    Diller L, Chow EJ, Gurney JG, Hudson MM, Kadin-Lottick NS, Kawashima TI, Leisenring WM, Meacham LR, Mertens AC, Mulrooney DA (2009) Chronic disease in the childhood cancer survivor study cohort: a review of published findings. J Clin Oncol 27(14):2339–2355PubMedPubMedCentralCrossRefGoogle Scholar
  34. 34.
    Geenen MM, Cardous-Ubbink MC, Kremer LC, van den Bos C, van der Pal HJ, Heinen RC, Jaspers MW, Koning CC, Oldenburger F, Langeveld NE (2007) Medical assessment of adverse health outcomes in long-term survivors of childhood cancer. JAMA 297(24):2705–2715PubMedCrossRefGoogle Scholar
  35. 35.
    Oeffinger KC, Mertens AC, Sklar CA, Kawashima T, Hudson MM, Meadows AT, Friedman DL, Marina N, Hobbie W, Kadan-Lottick NS, Schwartz CL, Leisenring W, Robison LL, Childhood Cancer Survivor S (2006) Chronic health conditions in adult survivors of childhood cancer. N Engl J Med 355(15):1572–1582PubMedCrossRefGoogle Scholar
  36. 36.
    Bowers DC, McNeil DE, Liu Y, Yasui Y, Stovall M, Gurney JG, Hudson MM, Donaldson SS, Packer RJ, Mitby PA (2005) Stroke as a late treatment effect of Hodgkin’s disease: a report from the childhood cancer survivor study. J Clin Oncol 23(27):6508–6515PubMedCrossRefGoogle Scholar
  37. 37.
    Landier W, Bhatia S (2008) Cancer survivorship: a pediatric perspective. Oncologist 13(11):1181–1192PubMedCrossRefGoogle Scholar
  38. 38.
    Armstrong GT, Liu Q, Yasui Y, Neglia JP, Leisenring W, Robison LL, Mertens AC (2009) Late mortality among 5-year survivors of childhood cancer: a summary from the childhood cancer survivor study. J Clin Oncol 27(14):2328–2338PubMedPubMedCentralCrossRefGoogle Scholar
  39. 39.
    Lawless SC, Verma P, Green DM, Mahoney MC (2007) Mortality experiences among 15+ year survivors of childhood and adolescent cancers. Pediatr Blood Cancer 48(3):333–338PubMedCrossRefGoogle Scholar
  40. 40.
    Cardous-Ubbink M, Heinen R, Langeveld N, Bakker P, Voute P, Caron H, Van Leeuwen F (2004) Long-term cause-specific mortality among five-year survivors of childhood cancer. Pediatr Blood Cancer 42(7):563–573PubMedCrossRefGoogle Scholar
  41. 41.
    Wilson CL, Cohn RJ, Johnston KA, Ashton LJ (2010) Late mortality and second cancers in an Australian cohort of childhood cancer survivors. Med J Aust 193(5):258–261PubMedGoogle Scholar
  42. 42.
    Mertens AC (2007) Cause of mortality in 5-year survivors of childhood cancer. Pediatr Blood Cancer 48(7):723–726. doi: 10.1002/pbc.21114 PubMedCrossRefGoogle Scholar
  43. 43.
    Garwicz S, Anderson H, Olsen JH, Falck Winther J, Sankila R, Langmark F, Tryggvadóttir L, Möller TR, for the Association of the Nordic Cancer R, the Nordic Society for Pediatric Hematology O (2012) Late and very late mortality in 5-year survivors of childhood cancer: changing pattern over four decades—experience from the nordic countries. Int J Cancer 131(7):1659–1666. doi: 10.1002/ijc.27393
  44. 44.
    Mertens AC, Liu Q, Neglia JP, Wasilewski K, Leisenring W, Armstrong GT, Robison LL, Yasui Y (2008) Cause-specific late mortality among 5-year survivors of childhood cancer: the childhood cancer survivor study. J Natl Cancer Inst 100(19):1368–1379PubMedPubMedCentralCrossRefGoogle Scholar
  45. 45.
    Li FP, Myers MH, Heise HW, Jaffe N (1978) The course of five-year survivors of cancer in childhood. The Journal of pediatrics 93(2):185–187PubMedCrossRefGoogle Scholar
  46. 46.
    Green DM, Zevon MA, Reese PA, Lowrie GS, Michalek AM (1994) Factors that influence the further survival of patients who survive for five years after the diagnosis of cancer in childhood or adolescence. Med Pediatr Oncol 22(2):91–96PubMedCrossRefGoogle Scholar
  47. 47.
    Mertens AC, Yasui Y, Neglia JP, Potter JD, Nesbit ME, Ruccione K, Smithson WA, Robison LL (2001) Late mortality experience in five-year survivors of childhood and adolescent cancer: the childhood cancer survivor study. J Clin Oncol 19(13):3163–3172PubMedGoogle Scholar
  48. 48.
    Landier W, Armenian S, Bhatia S (2015) Late effects of childhood cancer and its treatment. Pediatr Clin North Am 62(1):275–300. doi: 10.1016/j.pcl.2014.09.017 PubMedCrossRefGoogle Scholar
  49. 49.
    Fromer M (2007) New SEER report documents high risk of second cancers in cancer survivors. Oncol Times 29(5):8CrossRefGoogle Scholar
  50. 50.
    Friedman DL, Whitton J, Leisenring W, Mertens AC, Hammond S, Stovall M, Donaldson SS, Meadows AT, Robison LL, Neglia JP (2010) Subsequent neoplasms in 5-year survivors of childhood cancer: the childhood cancer survivor study. J Natl Cancer Inst 102(14):1083–1095PubMedPubMedCentralCrossRefGoogle Scholar
  51. 51.
    Bluhm EC, Ronckers C, Hayashi RJ, Neglia JP, Mertens AC, Stovall M, Meadows AT, Mitby PA, Whitton JA, Hammond S (2008) Cause-specific mortality and second cancer incidence after non-Hodgkin lymphoma: a report from the childhood cancer survivor study. Blood 111(8):4014–4021PubMedPubMedCentralCrossRefGoogle Scholar
  52. 52.
    Best T, Li D, Skol AD, Kirchhoff T, Jackson SA, Yasui Y, Bhatia S, Strong LC, Domchek SM, Nathanson KL (2011) Variants at 6q21 implicate PRDM1 in the etiology of therapy-induced second malignancies after Hodgkin’s lymphoma. Nat Med 17(8):941–943PubMedPubMedCentralCrossRefGoogle Scholar
  53. 53.
    Bhatia S, Sklar C (2002) Second cancers in survivors of childhood cancer. Nat Rev Cancer 2(2):124–132PubMedCrossRefGoogle Scholar
  54. 54.
    Knapke S, Nagarajan R, Correll J, Kent D, Burns K (2012) Hereditary cancer risk assessment in a pediatric oncology follow-up clinic. Pediatr Blood Cancer 58(1):85–89PubMedCrossRefGoogle Scholar
  55. 55.
    Wood ME, Vogel V, Ng A, Foxhall L, Goodwin P, Travis LB (2012) Second malignant neoplasms: assessment and strategies for risk reduction. J Clin Oncol 30(30):3734–3745PubMedCrossRefGoogle Scholar
  56. 56.
    Dickerman JD (2007) The late effects of childhood cancer therapy. Pediatrics 119(3):554–568PubMedCrossRefGoogle Scholar
  57. 57.
    Wu X-C, Prasad PK, Landry I, Harlan LC, Parsons HM, Lynch CF, Smith AW, Hamilton AS, Keegan TH (2015) Impact of the AYA HOPE comorbidity index on assessing health care service needs and health status among adolescents and young adults with cancer. Cancer Epidemiol Biomark Prev 24(12):1844–1849CrossRefGoogle Scholar
  58. 58.
    Aarsen FK, Arts WF, Van Veelen-Vincent ML, Lequin MH, Catsman-Berrevoets CE (2014) Long-term outcome in children with low grade tectal tumours and obstructive hydrocephalus. Eur J Paediatr Neurol 18(4):469–474PubMedCrossRefGoogle Scholar
  59. 59.
    Lipshultz SE, Franco VI, Miller TL, Colan SD, Sallan SE (2015) Cardiovascular disease in adult survivors of childhood cancer. Annu Rev Med 66:161–176PubMedCrossRefGoogle Scholar
  60. 60.
    Mulrooney DA, Blaes AH, Duprez D (2012) Vascular injury in cancer survivors. J Cardiovasc Transl Res 5(3):287–295PubMedCrossRefGoogle Scholar
  61. 61.
    Lipshultz S, Adams M, Colan S, Constine L, Herman E, Hsu D, Hudson M, Kremer L, Landy D, Miller T (2013) American heart association congenital heart defects committee of the council on cardiovascular disease in the young CoBCSCoC, Stroke Nursing CoCR. Long Term Cardiovasc Toxicity Child Adolescents Young Adults Who Receive Cancer Ther Pathophysiol Course Monit Manage Prev Res Dir Sci Statement Am Heart Assoc Circ 128:1927–1995Google Scholar
  62. 62.
    Ehrhardt MJ, Mulrooney DA (2015) Metabolic syndrome in adult survivors of childhood cancer: the intersection of oncology, endocrinology, and cardiology. Lancet Diab Endocrinol. doi: 10.1016/S2213-8587(15)00031-5
  63. 63.
    De Haas EC, Oosting SF, Lefrandt JD, Wolffenbuttel BH, Sleijfer DT, Gietema JA (2010) The metabolic syndrome in cancer survivors. Lancet Oncol 11(2):193–203PubMedCrossRefGoogle Scholar
  64. 64.
    Neville KA, Cohn RJ, Steinbeck KS, Johnston K, Walker JL (2006) Hyperinsulinemia, impaired glucose tolerance, and diabetes mellitus in survivors of childhood cancer: prevalence and risk factors. J Clin Endocrinol Metab 91(11):4401–4407PubMedCrossRefGoogle Scholar
  65. 65.
    Cohen J, Wakefield CE, Fleming CA, Gawthorne R, Tapsell LC, Cohn RJ (2012) Dietary intake after treatment in child cancer survivors. Pediatr Blood Cancer 58(5):752–757PubMedCrossRefGoogle Scholar
  66. 66.
    Cohen J, Laing DG, Wilkes FJ, Chan A, Gabriel M, Cohn RJ (2014) Taste and smell dysfunction in childhood cancer survivors. Appetite 75:135–140PubMedCrossRefGoogle Scholar
  67. 67.
    Fleming CA, Cohen J, Murphy A, Wakefield CE, Cohn RJ, Naumann FL (2015) Parent feeding interactions and practices during childhood cancer treatment. A qualitative investigation. Appetite 89:219–225PubMedGoogle Scholar
  68. 68.
    Bitsko MJ, Cohen D, Dillon R, Harvey J, Krull K, Klosky JL (2015) Psychosocial late effects in pediatric cancer survivors: a report from the children’s oncology group. Pediatric Blood & CancerGoogle Scholar
  69. 69.
    Wakefield CE, McLoone J, Goodenough B, Lenthen K, Cairns DR, Cohn RJ (2010) The psychosocial impact of completing childhood cancer treatment: a systematic review of the literature. J Pediatr Psychol 35(3):262–274PubMedCrossRefGoogle Scholar
  70. 70.
    Zebrack BJ, Chesler MA (2002) Quality of life in childhood cancer survivors. Psycho-Oncology 11(2):132–141PubMedCrossRefGoogle Scholar
  71. 71.
    Barakat LP, Alderfer MA, Kazak AE (2005) Posttraumatic growth in adolescent survivors of cancer and their mothers and fathers. J Pediatr PsycholGoogle Scholar
  72. 72.
    Michel G, Taylor N, Absolom K, Eiser C (2010) Benefit finding in survivors of childhood cancer and their parents: further empirical support for the benefit finding scale for children. Child Care Health Dev 36(1):123–129PubMedCrossRefGoogle Scholar
  73. 73.
    Wakefield CE, McLoone JK, Butow P, Lenthen K, Cohn RJ (2011) Parental adjustment to the completion of their child’s cancer treatment. Pediatr Blood Cancer 56(4):524–531PubMedCrossRefGoogle Scholar
  74. 74.
    Zeltzer LK, Recklitis C, Buchbinder D, Zebrack B, Casillas J, Tsao JC, Lu Q, Krull K (2009) Psychological status in childhood cancer survivors: a report from the childhood cancer survivor study. J Clin Oncol 27(14):2396–2404PubMedPubMedCentralCrossRefGoogle Scholar
  75. 75.
    Kazak AE, DeRosa BW, Schwartz LA, Hobbie W, Carlson C, Ittenbach RF, Mao JJ, Ginsberg JP (2010) Psychological outcomes and health beliefs in adolescent and young adult survivors of childhood cancer and controls. J Clin Oncol 28(12):2002–2007PubMedPubMedCentralCrossRefGoogle Scholar
  76. 76.
    Davidson J, Swartz M, Storck M, Krishnan RR, Hammett E (1985) A diagnostic and family study of posttraumatic stress disorder. Am J Psychiatry 142(1):90–93PubMedCrossRefGoogle Scholar
  77. 77.
    Ozono S, Saeki T, Mantani T, Ogata A, Okamura H, Si Nakagawa, Ueda K, Inada H, Yamawaki S (2010) Psychological distress related to patterns of family functioning among Japanese childhood cancer survivors and their parents. Psycho Oncol 19(5):545–552CrossRefGoogle Scholar
  78. 78.
    Alderfer MA, Navsaria N, Kazak AE (2009) Family functioning and posttraumatic stress disorder in adolescent survivors of childhood cancer. J Fam Psychol 23(5):717PubMedPubMedCentralCrossRefGoogle Scholar
  79. 79.
    Mulhern RK, Palmer SL (2003) Neurocognitive late effects in pediatric cancer. Curr Probl Cancer 27(4):177–197. doi: 10.1016/S0147-0272(03)00026-6 PubMedCrossRefGoogle Scholar
  80. 80.
    Castellino SM, Ullrich NJ, Whelen MJ, Lange BJ (2014) Developing Interventions for Cancer-Related Cognitive Dysfunction in Childhood Cancer Survivors. Journal of the National Cancer Institute 106(8). doi: 10.1093/jnci/dju186
  81. 81.
    Mulhern RK, Merchant TE, Gajjar A, Reddick WE, Kun LE (2004) Late neurocognitive sequelae in survivors of brain tumours in childhood. Lancet Oncol 5(7):399–408. doi: 10.1016/s1470-2045(04)01507-4 PubMedCrossRefGoogle Scholar
  82. 82.
    Pini S, Hugh-Jones S, Gardner PH (2012) What effect does a cancer diagnosis have on the educational engagement and school life of teenagers? A Syst Rev. Psycho Oncol 21(7):685–694Google Scholar
  83. 83.
    Mabbott DJ, Spiegler BJ, Greenberg ML, Rutka JT, Hyder DJ, Bouffet E (2005) Serial evaluation of academic and behavioral outcome after treatment with cranial radiation in childhood. J Clin Oncol 23(10):2256–2263. doi: 10.1200/jco.2005.01.158 PubMedCrossRefGoogle Scholar
  84. 84.
    Krull KR, Zhang N, Santucci A, Srivastava DK, Krasin MJ, Kun LE, Pui C-H, Robison LL, Hudson MM, Armstrong GT (2013) Long-term decline in intelligence among adult survivors of childhood acute lymphoblastic leukemia treated with cranial radiation. Blood 122(4):550–553. doi: 10.1182/blood-2013-03-487744 PubMedPubMedCentralCrossRefGoogle Scholar
  85. 85.
    Conklin HM, Krull KR, Reddick WE, Pei D, Cheng C, Pui CH (2012) Cognitive outcomes following contemporary treatment without cranial irradiation for childhood acute lymphoblastic leukemia. J Natl Cancer Inst 104(18):1386–1395. doi: 10.1093/jnci/djs344 PubMedPubMedCentralCrossRefGoogle Scholar
  86. 86.
    Moleski M (2000) Neuropsychological, neuroanatomical, and neurophysiological consequences of CNS chemotherapy for acute lymphoblastic leukemia. Arch Clin Neuropsychol 15(7):603–630. doi: 10.1093/arclin/15.7.603 PubMedCrossRefGoogle Scholar
  87. 87.
    Iyer NS, Balsamo LM, Bracken MB, Kadan-Lottick NS (2015) Chemotherapy-only treatment effects on long-term neurocognitive functioning in childhood ALL survivors: a review and meta-analysis. Blood 126(3):346–353. doi: 10.1182/blood-2015-02-627414 PubMedCrossRefGoogle Scholar
  88. 88.
    Wells EM, Nageswara Rao AA, Scafidi J, Packer RJ (2012) Neurotoxicity of biologically targeted agents in pediatric cancer trials. Pediatr Neurol 46(4):212–221. doi: 10.1016/j.pediatrneurol.2012.02.006 PubMedPubMedCentralCrossRefGoogle Scholar
  89. 89.
    Cole PD, Finkelstein Y, Stevenson KE, Blonquist TM, Vijayanathan V, Silverman LB, Neuberg DS, Sallan SE, Robaey P, Waber DP (2015) Polymorphisms in genes related to oxidative stress are associated with inferior cognitive function after therapy for childhood acute lymphoblastic leukemia. J Clin Oncol. doi: 10.1200/jco.2014.59.0273 PubMedPubMedCentralGoogle Scholar
  90. 90.
    Krull KR, Bhojwani D, Conklin HM, Pei D, Cheng C, Reddick WE, Sandlund JT, Pui C-H (2013) Genetic mediators of neurocognitive outcomes in survivors of childhood acute lymphoblastic leukemia. J Clin Oncol 31(17):2182–2188. doi: 10.1200/jco.2012.46.7944 PubMedPubMedCentralCrossRefGoogle Scholar
  91. 91.
    Patel SK, Peters BB, Bell T, Verner J, Katz ER, Baron MN, Buckwalter JG (2014) Parent involvement and neurocognitive functioning in childhood cancer survivors. J Behav Health 3(1):43–52Google Scholar
  92. 92.
    Lancashire ER, Frobisher C, Reulen RC, Winter DL, Glaser A, Hawkins MM (2010) Educational attainment among adult survivors of childhood cancer in great britain: a population-based cohort study. J Natl Cancer Inst 102(4):254–270. doi: 10.1093/jnci/djp498 PubMedCrossRefGoogle Scholar
  93. 93.
    Ghaderi S, Engeland A, Gunnes M, Moster D, Ruud E, Syse A, Wesenberg F, Bjørge T (2015) Educational attainment among long-term survivors of cancer in childhood and adolescence: a Norwegian population-based cohort study. J Cancer Surviv 1–9. doi: 10.1007/s11764-015-0453-z
  94. 94.
    Gerhardt CA, Dixon M, Miller K, Vannatta K, Valerius KS, Correll J, Noll RB (2007) Educational and occupational outcomes among survivors of childhood cancer during the transition to emerging adulthood. J Dev Behav Pediatr 28(6):448–455. doi: 10.1097/DBP.0b013e31811ff8e1 PubMedCrossRefGoogle Scholar
  95. 95.
    Kuehni CE, Strippoli M-PF, Rueegg CS, Rebholz CE, Bergstraesser E, Grotzer M, von der Weid NX, Michel G, for the Swiss Pediatric Oncology G (2012) Educational achievement in Swiss childhood cancer survivors compared with the general population. Cancer 118(5):1439–1449. doi: 10.1002/cncr.26418
  96. 96.
    Haupt R, Fears TR, Robison LL, Mills JL, Nicholson HS, Zeltzer LK, Meadows AT, Byrne J (1994) Educational attainment in long-term survivors of childhood acute lymphoblastic leukemia. JAMA 272(18):1427–1432PubMedCrossRefGoogle Scholar
  97. 97.
    Boman KK, Lindblad F, Hjern A (2010) Long-term outcomes of childhood cancer survivors in Sweden: a population-based study of education, employment, and income. Cancer 116(5):1385–1391. doi: 10.1002/cncr.24840 PubMedCrossRefGoogle Scholar
  98. 98.
    McLoone JK, Wakefield CE, Cohn RJ (2013) Childhood cancer survivors’ school (re)entry: Australian parents’ perceptions. Eur J Cancer Care 22(4):484–492. doi: 10.1111/ecc.12054 CrossRefGoogle Scholar
  99. 99.
    French AE, Tsangaris E, Barrera M, Guger S, Brown R, Urbach S, Stephens D, Nathan PC (2013) School attendance in childhood cancer survivors and their siblings. The Journal of Pediatrics 162(1):160–165. doi: 10.1016/j.jpeds.2012.06.066 PubMedCrossRefGoogle Scholar
  100. 100.
    McLoone JK, Wakefield CE, Butow P, Fleming C, Cohn RJ (2011) Returning to school after adolescent cancer: a qualitative examination of australian survivors’ and their families’ perspectives. J Adolesc Young Adult Oncol 1(2):87–94PubMedCrossRefGoogle Scholar
  101. 101.
    Pini S, Gardner P, Hugh-Jones S (2013) The impact of a cancer diagnosis on the education engagement of teenagers—patient and staff perspective. Eur J Oncol Nurs 17(3):317–323PubMedCrossRefGoogle Scholar
  102. 102.
    Donnan B (2009) What about schol …? Educational pathways to a successful future for children and adolescents with cancer. Asia Pac J Clin Oncol 5:A212Google Scholar
  103. 103.
    Hinds PS, Nuss SL, Ruccione KS, Withycombe JS, Jacobs S, DeLuca H, Faulkner C, Liu Y, Cheng YI, Gross HE (2012) PROMIS pediatric measures in pediatric oncology: Valid and clinically feasible indicators of patient‐reported outcomes. Pediatr Blood CancerGoogle Scholar
  104. 104.
    Garcia SF, Cella D, Clauser SB, Flynn KE, Lad T, Lai JS, Reeve BB, Smith AW, Stone AA, Weinfurt K (2007) Standardizing patient-reported outcomes assessment in cancer clinical trials: a patient-reported outcomes measurement information system initiative. J Clin Oncol Official J Am Soc Clin Oncol 25(32):5106–5112. doi: 10.1200/jco.2007.12.2341 CrossRefGoogle Scholar
  105. 105.
    Harshman LA, Barron S, Button AM, Smith BJ, Link BK, Lynch CF, Denburg NL (2012) Population-based exploration of academic achievement outcomes in pediatric acute lymphoblastic leukemia survivors. J Pediatr Psychol. doi: 10.1093/jpepsy/jsr119 PubMedPubMedCentralGoogle Scholar
  106. 106.
    Simard SB, Savard JE (2015) Screening and comorbidity of clinical levels of fear of cancer recurrence. J Cancer Surviv 1–11. doi: 10.1007/s11764-015-0424-4
  107. 107.
    Zebrack BJ, Gurney JG, Oeffinger K, Whitton J, Packer RJ, Mertens A, Turk N, Castleberry R, Dreyer Z, Robison LL, Zeltzer LK (2004) Psychological outcomes in long-term survivors of childhood brain cancer: a report from the childhood cancer survivor study. J Clin Oncol 22(6):999–1006. doi: 10.1200/jco.2004.06.148 PubMedCrossRefGoogle Scholar
  108. 108.
    Vannatta K, Gartstein MA, Short A, Noll RB (1998) A controlled study of peer relationships of children surviving brain tumors: teacher, peer, and self ratings. J Pediatr Psychol 23(5):279–287. doi: 10.1093/jpepsy/23.5.279 CrossRefPubMedGoogle Scholar
  109. 109.
    Moyer KH, Willard VW, Gross AM, Netson KL, Ashford JM, Kahalley LS, Wu S, Xiong X, Conklin HM (2012) The impact of attention on social functioning in survivors of pediatric acute lymphoblastic leukemia and brain tumors. Pediatr Blood Cancer 59(7):1290–1295. doi: 10.1002/pbc.24256 PubMedPubMedCentralCrossRefGoogle Scholar
  110. 110.
    Willard VW, Conklin HM, Boop FA, Wu S, Merchant TE (2014) Emotional and behavioral functioning after conformal radiation therapy for pediatric ependymoma. Int J Radiat Oncol Biol Phys 88(4):814–821. doi:http://dx.doi.org/10.1016/j.ijrobp.2013.12.006
  111. 111.
    Hocking MC, McCurdy M, Turner E, Kazak AE, Noll RB, Phillips P, Barakat LP (2014) Social competence in pediatric brain tumor survivors: Application of a model from social neuroscience and developmental psychology. Pediatr Blood Cancer 62(3):375–384. doi: 10.1002/pbc.25300 PubMedPubMedCentralCrossRefGoogle Scholar
  112. 112.
    Maddrey A, Bergeron J, Lombardo E, McDonald N, Mulne A, Barenberg P, Bowers D (2005) Neuropsychological performance and quality of life of 10+ year survivors of childhood medulloblastoma. J Neurooncol 72(3):245–253. doi: 10.1007/s11060-004-3009-z PubMedCrossRefGoogle Scholar
  113. 113.
    Crom D, Lensing S, Rai S, Snider M, Cash D, Hudson M (2007) Marriage, employment, and health insurance in adult survivors of childhood cancer. J Cancer Surviv 1(3):237–245. doi: 10.1007/s11764-007-0026-x PubMedCrossRefGoogle Scholar
  114. 114.
    de Boer AGEM, Verbeek JHAM, van Dijk FJH (2006) Adult survivors of childhood cancer and unemployment. Cancer 107(1):1–11. doi: 10.1002/cncr.21974 PubMedCrossRefGoogle Scholar
  115. 115.
    Boman KK, Bodegård G (2004) Life after cancer in childhood: social adjustment and educational and vocational status of young-adult survivors. J Pediatr Hematol Oncol 26(6):354–362PubMedCrossRefGoogle Scholar
  116. 116.
    Möller TR, Garwicz S, Barlow L, Winther JF, Glattre E, Olafsdottir G, Olsen JH, Perfekt R, Ritvanen A, Sankila R (2001) Decreasing late mortality among five-year survivors of cancer in childhood and adolescence: a population-based study in the Nordic countries. J Clin Oncol 19(13):3173–3181PubMedGoogle Scholar
  117. 117.
    Armstrong GT, Chen Y, Yasui Y, Leisenring W, Gibson TM, Mertens AC, Stovall M, Oeffinger KC, Bhatia S, Krull KR (2016) Reduction in late mortality among 5-year survivors of childhood cancer. N Engl J MedGoogle Scholar
  118. 118.
    Anderson ME (2016) Update on survival in osteosarcoma. Orthop Clin North Am 47(1):283–292PubMedCrossRefGoogle Scholar
  119. 119.
    Jockovich M, Mendenhall NP, Sombeck MD, Talbert JL, Copeland E 3rd, Bland KI (1994) Long-term complications of laparotomy in Hodgkin’s disease. Ann Surg 219(6):615PubMedPubMedCentralCrossRefGoogle Scholar
  120. 120.
    Rodeberg DA, Anderson JR, Arndt CA, Ferrer FA, Raney RB, Jenney ME, Brecht IB, Koscielniak E, Carli M, Bisogno G (2011) Comparison of outcomes based on treatment algorithms for rhabdomyosarcoma of the bladder/prostate: combined results from the children’s oncology group, German cooperative soft tissue sarcoma study, Italian cooperative group, and International society of pediatric oncology malignant mesenchymal tumors committee. Int J Cancer 128(5):1232–1239PubMedCrossRefGoogle Scholar
  121. 121.
    Davidoff AM, Interiano RB, Wynn L, Santos ND, Dome JS, Green DM, Brennan RC, McCarville MB, Krasin MJ, Kieran K (2015) Overall survival and renal function of patients with synchronous bilateral wilms tumor undergoing surgery at a single institution. Ann Surg 262(4):570–576PubMedCrossRefGoogle Scholar
  122. 122.
    Wilson CL, Gawade PL, Ness KK (2015) Impairments that influence physical function among survivors of childhood cancer. Children 2(1):1–36PubMedPubMedCentralCrossRefGoogle Scholar
  123. 123.
    Wilejto M, Giuseppe GD, Hitzler J, Gupta S, Abla O (2015) Treatment of young children with CNS-positive acute lymphoblastic leukemia without cranial radiotherapy. Pediatr Blood Cancer 62(11):1881–1885PubMedCrossRefGoogle Scholar
  124. 124.
    Cohen BH, Geyer JR, Miller DC, Curran JG, Zhou T, Holmes E, Ingles SA, Dunkel IJ, Hilden J, Packer RJ (2015) Pilot study of intensive chemotherapy with peripheral hematopoietic cell support for children less than 3 years of age with malignant brain tumors, the CCG-99703 phase I/II study. A report from the children’s oncology group. Pediatric neurologyGoogle Scholar
  125. 125.
    Trahair T, Vowels M, Johnston K, Cohn R, Russell S, Neville K, Carroll S, Marshall G (2007) Long-term outcomes in children with high-risk neuroblastoma treated with autologous stem cell transplantation. Bone Marrow Transplant 40(8):741–746PubMedCrossRefGoogle Scholar
  126. 126.
    Green DM, Grigoriev YA, Nan B, Takashima JR, Norkool PA, D’Angio GJ, Breslow NE (2001) Congestive heart failure after treatment for Wilms’ tumor: a report from the National Wilms’ tumor study group. J Clin Oncol 19(7):1926–1934PubMedGoogle Scholar
  127. 127.
    Kollmannsberger C, Beyer J, Droz J, Harstrick A, Hartmann J, Biron P, Flechon A, Schöffski P, Kuczyk M, Schmoll H (1998) Secondary leukemia following high cumulative doses of etoposide in patients treated for advanced germ cell tumors. J Clin Oncol 16(10):3386–3391PubMedGoogle Scholar
  128. 128.
    Schwartz CL (1999) Long-term survivors of childhood cancer: the late effects of therapy. Oncologist 4(1):45–54PubMedGoogle Scholar
  129. 129.
    Goldsby RE, Ablin AR (2004) Surviving childhood cancer; now what? controversies regarding long-term follow-up. Pediatr Blood Cancer 43(3):211–214PubMedCrossRefGoogle Scholar
  130. 130.
    Freyer DR (2010) Transition of care for young adult survivors of childhood and adolescent cancer: rationale and approaches. J Clin Oncol 28(32):4810–4818PubMedPubMedCentralCrossRefGoogle Scholar
  131. 131.
    Oeffinger KC, Argenbright KE, Levitt GE, McCabe MS, Anderson PR, Berry E, Maher J, Merrill J, Wollins DS (2014) Models of cancer survivorship health care: moving forward. In: ASCO survivorship care compendium. American Society of Clinical OncologyGoogle Scholar
  132. 132.
    Hewitt M (2003) In: Greenfield S, Stovall E (eds) From cancer patient to cancer survivor: lost in transition (Report of the Institute of Medicine & National Research Council). National Academy Press, Washington, DCGoogle Scholar
  133. 133.
    Wallace W, Thompson L, Anderson R (2013) Long term follow-up of survivors of childhood cancer: summary of updated SIGN guidance. BMJ 346Google Scholar
  134. 134.
    Sieswerda E, Postma A, van Dalen EC, van der Pal HJ, Tissing WJ, Rammeloo LA, Kok WE, van Leeuwen FE, Caron H, Kremer L (2012) The Dutch childhood oncology group guideline for follow-up of asymptomatic cardiac dysfunction in childhood cancer survivors. Ann Oncol 23(8):2191–2198PubMedCrossRefGoogle Scholar
  135. 135.
    Kremer L, Mulder RL, Oeffinger KC, Bhatia S, Landier W, Levitt G, Constine LS, Wallace WH, Caron HN, Armenian SH (2013) 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(4):543–549PubMedCrossRefGoogle Scholar
  136. 136.
    National Breast and Ovarian Cancer Centre (Australia) (2010) Recommendations for follow-up of women with early breast cancer. National Breast and Ovarian Cancer Centre, Strawberry Hills N.S.W.Google Scholar
  137. 137.
    Skolarus TA, Wolf A, Erb NL, Brooks DD, Rivers BM, Underwood W, Salner AL, Zelefsky MJ, Aragon-Ching JB, Slovin SF (2014) American cancer society prostate cancer survivorship care guidelines. CA Cancer J Clin 64(4):225–249PubMedCrossRefGoogle Scholar
  138. 138.
    Runowicz CD, Leach CR, Henry NL, Henry KS, Mackey HT, Cowens-Alvarado RL, Cannady RS, Pratt-Chapman ML, Edge SB, Jacobs LA (2016) American cancer society/american society of clinical oncology breast cancer survivorship care guideline. CA Cancer J Clin 66(1):43–73PubMedCrossRefGoogle Scholar
  139. 139.
    Ligibel JA, Denlinger CS (2013) New NCCN guidelines® for survivorship care. J Natl Compr Canc Netw 11(5S):640–644PubMedGoogle Scholar
  140. 140.
    Edgar A, Duffin K, Borthwick S, Marciniak-Stepak P, Wallace W (2013) Can intensity of long-term follow-up for survivors of childhood and teenage cancer be determined by therapy-based risk stratification? BMJ open 3 (8):e002451Google Scholar
  141. 141.
    Taylor A, Hawkins M, Griffiths A, Davies H, Douglas C, Jenney M, Wallace WHB, Levitt G (2004) Long-term follow-up of survivors of childhood cancer in the UK. Pediatr Blood Cancer 42(2):161–168PubMedCrossRefGoogle Scholar
  142. 142.
    Skinner R, Wallace WHB, Levitt GA, LEG LEG, Group UCsCS (2006) Long-term follow-up of people who have survived cancer during childhood. Lancet oncol 7(6):489–498Google Scholar
  143. 143.
    Jenney M, Levitt G (2008) Follow-up of children who survive cancer. BMJ. Br Med J 336(7647):732CrossRefGoogle Scholar
  144. 144.
    Wallace WHB, Blacklay A, Eiser C, Davies H, Hawkins M, Levitt GA, Jenney ME (2001) Developing strategies for long term follow up of survivors of childhood cancer. BMJ 323(7307):271–274PubMedPubMedCentralCrossRefGoogle Scholar
  145. 145.
    Hewitt M, Greenfield S, Stovall E (2006) From cancer patient to cancer survivor: lost in transition. Committee on cancer survivorship: improving care and quality of life, institute of medicine and national research council. The National Academies Press, Washington, DCGoogle Scholar
  146. 146.
    Eiser C, Absolom K, Greenfield D, Glaser A, Horne B, Waite H, Urquhart T, Wallace WHB, Ross R, Davies H (2006) Follow-up after childhood cancer: evaluation of a three-level model. Eur J Cancer 42(18):3186–3190PubMedCrossRefGoogle Scholar
  147. 147.
    Ganz PA, Casillas J, Hahn EE (2008) Ensuring quality care for cancer survivors: implementing the survivorship care plan. In: Seminars in oncology nursing, vol 3. Elsevier, pp 208–217Google Scholar
  148. 148.
    Salz T, Oeffinger KC, McCabe MS, Layne TM, Bach PB (2012) Survivorship care plans in research and practice. CA Cancer J Clin 62(2):101–117. doi: 10.3322/caac.20142 PubMedPubMedCentralCrossRefGoogle Scholar
  149. 149.
    Hahn EE, Ganz PA (2011) Survivorship programs and care plans in practice: variations on a theme. J Oncol Pract Am Soc Clin Oncol 7(2):70–75. doi: 10.1200/JOP.2010.000115 CrossRefGoogle Scholar
  150. 150.
    Makari-Judson G, Hubbard S, Wrenn T (2013) Use of survivorship care plans to re-engineer breast cancer follow-up. Open Breast Cancer J 5(1):23–26CrossRefGoogle Scholar
  151. 151.
    Jackson C, Cheater FM, Reid I (2008) A systematic review of decision support needs of parents making child health decisions. Health Expect Int J Publ Participation Health Care Health Policy 11(3):232–251. doi: 10.1111/j.1369-7625.2008.00496.x Google Scholar
  152. 152.
    Burg MA, Lopez ED, Dailey A, Keller ME, Prendergast B (2009) The potential of survivorship care plans in primary care follow-up of minority breast cancer patients. J Gen Intern Med 24(Suppl 2):S467–S471. doi: 10.1007/s11606-009-1012-y PubMedCrossRefGoogle Scholar
  153. 153.
    Oeffinger KC, Hudson MM, Mertens AC, Smith SM, Mitby PA, Eshelman-Kent DA, Ford JS, Jones JK, Kamani S, Robison LL (2011) 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(5):818–824PubMedCrossRefGoogle Scholar
  154. 154.
    Baravelli C, Krishnasamy M, Pezaro C, Schofield P, Lotfi-Jam K, Rogers M, Milne D, Aranda S, King D, Shaw B (2009) The views of bowel cancer survivors and health care professionals regarding survivorship care plans and post treatment follow up. J Cancer Surviv 3(2):99–108PubMedCrossRefGoogle Scholar
  155. 155.
    Brennan ME, Butow P, Spillane AJ, Boyle FM (2010) Survivorship care after breast cancer: follow-up practices of Australian health professionals and attitudes to a survivorship care plan. Asia Pac J Clin Oncol 6(2):116–125PubMedCrossRefGoogle Scholar
  156. 156.
    Mayer DK, Gerstel A, Leak AN, Smith SK (2012) Patient and provider preferences for survivorship care plans. J Oncol Pract 8(4):e80–e86PubMedPubMedCentralCrossRefGoogle Scholar
  157. 157.
    Grunfeld E, Julian JA, Pond G, Maunsell E, Coyle D, Folkes A, Joy AA, Provencher L, Rayson D, Rheaume DE (2011) Evaluating survivorship care plans: results of a randomized, clinical trial of patients with breast cancer. J Clin Oncol 29(36):4755–4762PubMedCrossRefGoogle Scholar
  158. 158.
    Nicolaije KA, Ezendam NP, Vos MC, Pijnenborg JM, Boll D, Boss EA, Hermans RH, Engelhart KC, Haartsen JE, Pijlman BM (2015) Impact of an automatically generated cancer survivorship care plan on patient-reported outcomes in routine clinical practice: longitudinal outcomes of a pragmatic, cluster randomized trial. J Clin Oncol 33(31):3550–3559PubMedCrossRefGoogle Scholar
  159. 159.
    Blum RW, Garell D, Hodgman CH, Jorissen TW, Okinow NA, Orr DP, Slap GB (1993) Transition from child-centered to adult health-care systems for adolescents with chronic conditions: a position paper of the Society for Adolescent Medicine. J Adolesc Health 14(7):570–576PubMedCrossRefGoogle Scholar
  160. 160.
    Reiss J, Gibson R (2002) Health care transition: destinations unknown. Pediatrics 110(Supplement 3):1307–1314PubMedGoogle Scholar
  161. 161.
    Ginsberg JP, Hobbie WL, Carlson CA, Meadows AT (2006) Delivering long-term follow-up care to pediatric cancer survivors: transitional care issues. Pediatr Blood Cancer 46(2):169–173PubMedCrossRefGoogle Scholar
  162. 162.
    Bashore L (2004) Childhood and adolescent cancer survivors’ knowledge of their disease and effects of treatment. J Pediatr Oncol Nurs 21(2):98–102PubMedCrossRefGoogle Scholar
  163. 163.
    Fox A (2002) Physicians as barriers to successful transitional care. Int J Adolesc Med Health 14(1):3–8PubMedCrossRefGoogle Scholar
  164. 164.
    Henderson TO, Hlubocky FJ, Wroblewski KE, Diller L, Daugherty CK (2010) Physician preferences and knowledge gaps regarding the care of childhood cancer survivors: a mailed survey of pediatric oncologists. J Clin Oncol 28(5):878–883PubMedCrossRefGoogle Scholar
  165. 165.
    Eshelman-Kent D, Kinahan KE, Hobbie W, Landier W, Teal S, Friedman D, Nagarajan R, Freyer DR (2011) 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(4):345–357PubMedPubMedCentralCrossRefGoogle Scholar
  166. 166.
    Taylor PJ, McClanahan KK (2010) Essential adolescent medicine. ElsevierGoogle Scholar
  167. 167.
    Cowens-Alvarado R, Sharpe K, Pratt-Chapman M, Willis A, Gansler T, Ganz PA, Edge SB, McCabe MS, Stein K (2013) Advancing survivorship care through the national cancer survivorship resource center. CA Cancer J Clin 63(3):147–150PubMedCrossRefGoogle Scholar
  168. 168.
    Kaur JS (2014) How should we “empower” cancer patients? Cancer 120(20):3108–3110Google Scholar
  169. 169.
    Grunfeld E (2005) Cancer survivorship: a challenge for primary care physicians. Br J Gen Pract 55(519):741–742PubMedPubMedCentralGoogle Scholar
  170. 170.
    Nissen MJ, Beran MS, Lee MW, Mehta SR, Pine DA, Swenson KK (2007) Views of primary care providers on follow-up care of cancer patients. Fam Med 39(7):477–482PubMedGoogle Scholar
  171. 171.
    Mitchell GK, Burridge LH, Colquist SP, Love A (2012) General practitioners’ perceptions of their role in cancer care and factors which influence this role. Health Soc Care Community 20(6):607–616. doi: 10.1111/j.1365-2524.2012.01075.x PubMedCrossRefGoogle Scholar
  172. 172.
    Johnson CE, Lizama N, Garg N, Ghosh M, Emery J, Saunders C (2014) Australian general practitioners’ preferences for managing the care of people diagnosed with cancer. Asia Pac J Clin Oncol 10(2):e90–e98. doi: 10.1111/ajco.12047 PubMedCrossRefGoogle Scholar
  173. 173.
    CanTeen (2015) Exploring survivorship care for adolescent and young adult cancer survivors in australia. CanTeen, Australia (unpublished)Google Scholar
  174. 174.
    Nathan PC, Greenberg ML, Ness KK, Hudson MM, Mertens AC, Mahoney MC, Gurney JG, Donaldson SS, Leisenring WM, Robison LL (2008) Medical care in long-term survivors of childhood cancer: a report from the childhood cancer survivor study. J Clin Oncol 26(27):4401–4409PubMedPubMedCentralCrossRefGoogle Scholar
  175. 175.
    Mulrooney RC, Singh N, Kaur N, Callan JF (2009) An “off-on” sensor for fluoride using luminescent CdSe/ZnS quantum dots. Chem Commun 6:686–688. doi: 10.1039/b817569a CrossRefGoogle Scholar
  176. 176.
    Oeffinger KC, Mertens AC, Hudson MM, Gurney JG, Casillas J, Chen H, Whitton J, Yeazel M, Yasui Y, Robison LL (2004) Health care of young adult survivors of childhood cancer: a report from the childhood cancer survivor study. The Annals of Family Medicine 2(1):61–70PubMedCrossRefGoogle Scholar
  177. 177.
    Casillas J, Oeffinger KC, Hudson MM, Greenberg ML, Yeazel MW, Ness KK, Henderson TO, Robison LL, Armstrong GT, Liu Q, Leisenring W, Yasui Y, Nathan PC (2015) Identifying predictors of longitudinal decline in the level of medical care received by adult survivors of childhood cancer: a report from the childhood cancer survivor study. Health Serv Res. doi: 10.1111/1475-6773.12282 PubMedPubMedCentralGoogle Scholar
  178. 178.
    Edgar A, Borthwick S, Duffin K, Marciniak-Stepak P, Wallace W (2012) Survivors of childhood cancer lost to follow-up can be re-engaged into active long-term follow-up by a postal health questionnaire intervention. Eur J Cancer 48(7):1066–1073PubMedCrossRefGoogle Scholar
  179. 179.
    Blaauwbroek R, Groenier K, Kamps W, Meyboom-de Jong B, Postma A (2007) Late effects in adult survivors of childhood cancer: the need for life-long follow-up. Ann OncolGoogle Scholar
  180. 180.
    Earle EA, Davies H, Greenfield D, Ross R, Eiser C (2005) Follow-up care for childhood cancer survivors: a focus group analysis. Eur J Cancer 41(18):2882–2886PubMedCrossRefGoogle Scholar
  181. 181.
    Mullan F (1985) Seasons of survival: reflections of a physician with cancer. N Engl J Med 313(4):270–273PubMedCrossRefGoogle Scholar
  182. 182.
    Syed IA, Klassen AF, Barr R, Wang R, Dix D, Nelson M, Rosenberg-Yunger ZR, Nathan PC (2015) Factors associated with childhood cancer survivors’ knowledge about their diagnosis, treatment, and risk for late effects. J Cancer Surviv 1–12Google Scholar
  183. 183.
    Oeffinger KC, Hudson MM (2004) Long-term complications following childhood and adolescent cancer: foundations for providing risk-based health care for survivors. CA Cancer J Clin 54(4):208–236PubMedCrossRefGoogle Scholar
  184. 184.
    Group CsO, Group CsO (2008) Long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers. Children’s Oncology Group, Arcadia, CAGoogle Scholar
  185. 185.
    Steinberger J, Sinaiko AR, Kelly AS, Leisenring WM, Steffen LM, Goodman P, Mulrooney DA, Dietz AC, Moran A, Perkins JL, Baker KS (2012) Cardiovascular risk and insulin resistance in childhood cancer survivors. J Pediatr 160(3):494–499. doi: 10.1016/j.jpeds.2011.08.018 PubMedCrossRefGoogle Scholar
  186. 186.
    Stolley MR, Restrepo J, Sharp LK (2010) Diet and physical activity in childhood cancer survivors: a review of the literature. Ann Behav Med 39(3):232–249. doi: 10.1007/s12160-010-9192-6 PubMedPubMedCentralCrossRefGoogle Scholar
  187. 187.
    Nathan PC, Ford JS, Henderson TO, Hudson MM, Emmons KM, Casillas JN, Lown EA, Ness KK, Oeffinger KC, Nathan PC, Ford JS, Henderson TO, Hudson MM, Emmons KM, Casillas JN, Lown EA, Ness KK, Oeffinger KC (2009) Health behaviors, medical care, and interventions to promote healthy living in the childhood cancer survivor study cohort. J Clin Oncol 27(14):2363–2373PubMedPubMedCentralCrossRefGoogle Scholar
  188. 188.
    Neville KA, Cohn RJ (2015) Bone health in survivors of childhood cancer. Lancet Diabetes & Endocrinology. doi: 10.1016/S2213-8587(15)00029-7
  189. 189.
    Durlak JA, Wells AM (1998) Evaluation of indicated preventive intervention (secondary prevention) mental health programs for children and adolescents. Am J Commun Psychol 26(5):775–802CrossRefGoogle Scholar
  190. 190.
    Butler AC, Chapman JE, Forman EM, Beck AT (2006) The empirical status of cognitive-behavioral therapy: a review of meta-analyses. Clin Psychol Rev 26(1):17–31PubMedCrossRefGoogle Scholar
  191. 191.
    Greening L, Stoppelbein L (2007) Brief report: pediatric cancer, parental coping style, and risk for depressive, posttraumatic stress, and anxiety symptoms. J Pediatr Psychol 32(10):1272–1277PubMedCrossRefGoogle Scholar
  192. 192.
    Overholser JC, Fritz GK (1991) The impact of childhood cancer on the family. J Psychosoc Oncol 8(4):71–85CrossRefGoogle Scholar
  193. 193.
    Drotar D (1997) Relating parent and family functioning to the psychological adjustment of children with chronic health conditions: what have we learned? What do we need to know? J Pediatr Psychol 22(2):149–165Google Scholar
  194. 194.
    Frank NC, Blount RL, Brown RT (1997) Attributions, coping, and adjustment in children with cancer. J Pediatr Psychol 22(4):563–576PubMedCrossRefGoogle Scholar
  195. 195.
    Canning EH, Hanser SB, Shade KA, Boyce WT (1993) Maternal distress and discrepancy in reports of psychopathology in chronically ill children. Psychosom J Consultation Liaison Psychiatry 34:506–511CrossRefGoogle Scholar
  196. 196.
    Mulhern RK, Fairclough DL, Smith B, Douglas SM (1992) Maternal depression, assessment methods, and physical symptoms affect estimates of depressive symptomatology among children with cancer. J Pediatr Psychol 17(3):313–326PubMedCrossRefGoogle Scholar
  197. 197.
    Eakin EG, Youlden DR, Baade PD, Lawler SP, Reeves MM, Heyworth JS, Fritschi L (2006) Health status of long-term cancer survivors: results from an Australian population-based sample. Cancer Epidemiol Biomark Prev 15(10):1969–1976CrossRefGoogle Scholar
  198. 198.
    Baade PD, Fritschi L, Eakin EG (2006) Non-cancer mortality among people diagnosed with cancer (Australia). Cancer Causes Control 17(3):287–297PubMedCrossRefGoogle Scholar
  199. 199.
    Blanchard CM, Courneya KS, Stein K (2008) Cancer survivors’ adherence to lifestyle behavior recommendations and associations with health-related quality of life: results from the American Cancer Society’s SCS-II. J Clin Oncol 26(13):2198–2204PubMedCrossRefGoogle Scholar
  200. 200.
    Sabatino SA, Coates RJ, Uhler RJ, Pollack LA, Alley LG, Zauderer LJ (2007) Provider counseling about health behaviors among cancer survivors in the United States. J Clin Oncol 25(15):2100–2106PubMedCrossRefGoogle Scholar
  201. 201.
    Zebrack BJ, Yi J, Petersen L, Ganz PA (2008) The impact of cancer and quality of life for long-term survivors. Psycho Oncol 17(9):891–900CrossRefGoogle Scholar
  202. 202.
    Glaser A, Levitt G, Morris P, Tapp J, Gibson F (2013) Enhanced quality and productivity of long-term aftercare of cancer in young people. Arch Dis Child archdischild-2013-304348Google Scholar
  203. 203.
    Gatta G, Zigon G, Capocaccia R, Coebergh JW, Desandes E, Kaatsch P, Pastore G, Peris-Bonet R, Stiller CA, Group EW (2009) Survival of European children and young adults with cancer diagnosed 1995–2002. Eur J Cancer 45(6):992–1005Google Scholar
  204. 204.
    Mulder RL, Kremer LC, Hudson MM, Bhatia S, Landier W, Levitt G, Constine LS, Wallace WH, van Leeuwen FE, Ronckers CM (2013) Recommendations for breast cancer surveillance for female survivors of childhood, adolescent, and young adult cancer given chest radiation: a report from the international late effects of childhood cancer guideline harmonization group. Lancet Oncol 14(13):e621–e629PubMedPubMedCentralCrossRefGoogle Scholar
  205. 205.
    Galper SL, James BY, Mauch PM, Strasser JF, Silver B, LaCasce A, Marcus KJ, Stevenson MA, Chen MH, Ng AK (2011) Clinically significant cardiac disease in patients with Hodgkin lymphoma treated with mediastinal irradiation. Blood 117(2):412–418PubMedCrossRefGoogle Scholar
  206. 206.
    Haddy N, Diallo S, El-Fayech C, Schwartz B, Pein F, Hawkins M, Veres C, Oberlin O, Guibout C, Pacquement H (2015) Cardiac diseases following childhood cancer treatment: cohort study. Circulation CIRCULATIONAHA–115.016686Google Scholar
  207. 207.
    Bowers DC, Liu Y, Leisenring W, McNeil E, Stovall M, Gurney JG, Robison LL, Packer RJ, Oeffinger KC (2006) 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(33):5277–5282PubMedCrossRefGoogle Scholar
  208. 208.
    Knight KRG, Kraemer DF, Neuwelt EA (2005) Ototoxicity in children receiving platinum chemotherapy: underestimating a commonly occurring toxicity that may influence academic and social development. J Clin Oncol 23(34):8588–8596PubMedCrossRefGoogle Scholar
  209. 209.
    Armstrong GT, Stovall M, Robison LL (2010) Long-term effects of radiation exposure among adult survivors of childhood cancer: results from the childhood cancer survivor study. Radiat Res 174(6b):840–850PubMedPubMedCentralCrossRefGoogle Scholar
  210. 210.
    Gregory JW, Reilly JJ (2004) Body composition and obesity. In: Wallace WH, Green DM (eds) Late effects of childhood cancer. Arnold, London, United Kingdom, pp 147–161Google Scholar
  211. 211.
    Gunn HM, Emilsson H, Gabriel M, Maguire AM, Steinbeck KS (2015) Metabolic health in childhood cancer survivors: a longitudinal study in a long-term follow-up clinic. J Adolesc Young Adult OncolGoogle Scholar
  212. 212.
    Goldsby R, Chen Y, Raber S, Li L, Diefenbach K, Shnorhavorian M, Kadan–Lottick N, Kastrinos F, Yasui Y, Stovall M (2011) Survivors of childhood cancer have increased risk of gastrointestinal complications later in life. Gastroenterology 140(5):1464–1471. e1461Google Scholar
  213. 213.
    Romerius P, Ståhl O, Moëll C, Relander T, Cavallin-Stahl E, Wiebe T, Giwercman YL, Giwercman A (2009) Hypogonadism risk in men treated for childhood cancer. J Clin Endocrinol Metab 94(11):4180–4186PubMedCrossRefGoogle Scholar
  214. 214.
    Rose SR, Schreiber RE, Kearney NS, Lustig RH, Danish RK, Burghen GA, Hudson MM (2004) Hypothalamic dysfunction after chemotherapy. J Pediatr Endocrinol Metab 17(1):55–66PubMedCrossRefGoogle Scholar
  215. 215.
    Mertens AC, Yasui Y, Liu Y, Stovall M, Hutchinson R, Ginsberg J, Sklar C, Robison LL (2002) Pulmonary complications in survivors of childhood and adolescent cancer. Cancer 95(11):2431–2441PubMedCrossRefGoogle Scholar
  216. 216.
    Moser EC, Noordijk EM, Carde P, Tirelli U, Baars JW, Thomas J, Bron D, Meerwaldt JH, van Glabbeke M, Raemaekers JM (2005) Late non-neoplastic events in patients with aggressive non-Hodgkin’s lymphoma in four randomized European organisation for research and treatment of cancer trials. Clin Lymphoma Myeloma 6(2):122–130PubMedCrossRefGoogle Scholar
  217. 217.
    Hudson MM, Mertens AC, Yasui Y, Hobbie W, Chen H, Gurney JG, Yeazel M, Recklitis CJ, Marina N, Robison LR (2003) Health status of adult long-term survivors of childhood cancer: a report from the childhood cancer survivor study. JAMA 290(12):1583–1592PubMedCrossRefGoogle Scholar
  218. 218.
    Duggal M, Curzon M, Bailey C, Lewis I, Prendergast M (1997) Dental parameters in the long term survivors of childhood cancer compared with siblings. Oral Oncol 33(5):348–353PubMedCrossRefGoogle Scholar
  219. 219.
    Whelan KF, Stratton K, Kawashima T, Waterbor JW, Castleberry RP, Stovall M, Sklar CA, Packer RJ, Mitby P, Aitken CL (2010) Ocular late effects in childhood and adolescent cancer survivors: a report from the childhood cancer survivor study. Pediatr Blood Cancer 54(1):103–109PubMedPubMedCentralCrossRefGoogle Scholar
  220. 220.
    Paulides M, Kremers A, Stöhr W, Bielack S, Jürgens H, Treuner J, Beck J, Langer T (2006) Prospective longitudinal evaluation of doxorubicin-induced cardiomyopathy in sarcoma patients: a report of the late effects surveillance system (LESS). Pediatr Blood Cancer 46(4):489–495PubMedCrossRefGoogle Scholar
  221. 221.
    Ness KK, Jones KE, Smith WA, Spunt SL, Wilson CL, Armstrong GT, Srivastava DK, Robison LL, Hudson MM, Gurney JG (2013) 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(8):1451–1457PubMedPubMedCentralCrossRefGoogle Scholar
  222. 222.
    Kaste S, Jones-Wallace D, Rose S, Boyett J, Lustig R, Rivera G, Pui C, Hudson M (2001) Bone mineral decrements in survivors of childhood acute lymphoblastic leukemia: frequency of occurrence and risk factors for their development. Leukemia 15(5):728–734PubMedCrossRefGoogle Scholar
  223. 223.
    Byrne J, Mulvihill JJ, Myers MH, Connelly RR, Naughton MD, Krauss MR, Steinhorn SC, Hassinger DD, Austin DF, Bragg K (1987) Effects of treatment on fertility in long-term survivors of childhood or adolescent cancer. N Engl J Med 317(21):1315–1321PubMedCrossRefGoogle Scholar
  224. 224.
    Kenney LB, Laufer MR, Grant FD, Grier H, Diller L (2001) High risk of infertility and long term gonadal damage in males treated with high dose cyclophosphamide for sarcoma during childhood. Cancer 91(3):613–621PubMedCrossRefGoogle Scholar
  225. 225.
    Weiner DJ, Maity A, Carlson CA, Ginsberg JP (2006) Pulmonary function abnormalities in children treated with whole lung irradiation. Pediatr Blood Cancer 46(2):222–227PubMedCrossRefGoogle Scholar
  226. 226.
    Minicucci EM, Lopes LF, Crocci AJ (2003) Dental abnormalities in children after chemotherapy treatment for acute lymphoid leukemia. Leuk Res 27(1):45–50PubMedCrossRefGoogle Scholar
  227. 227.
    Jones DP, Spunt SL, Green D, Springate JE (2008) Renal late effects in patients treated for cancer in childhood: a report from the children’s oncology group. Pediatr Blood Cancer 51(6):724–731PubMedCrossRefPubMedCentralGoogle Scholar

Further Reading

  1. 228.
    Alderfer MA, Navsaria N, Kazak AE (2009) Family functioning and posttraumatic stress disorder in adolescent survivors of childhood cancer. J Fam Psychol 23(5):717PubMedPubMedCentralCrossRefGoogle Scholar
  2. 229.
    Armenian SH, Bhatia S (2016) Looking back to inform the future: Lesson learned from survivors of childhood cancer. CancerGoogle Scholar
  3. 230.
    Armenian SH, Hudson MM, Mulder RL, Chen MH, Constine LS, Dwyer M, Nathan PC, Tissing WJ, Shankar S, Sieswerda E (2015) Recommendations for cardiomyopathy surveillance for survivors of childhood cancer: a report from the international late effects of childhood cancer guideline harmonization group. Lancet Oncol 16(3):e123–e136PubMedPubMedCentralCrossRefGoogle Scholar
  4. 231.
    Bleyer A, Barr R, Hayes-Lattin B, Thomas D, Ellis C, Anderson B (2008) The distinctive biology of cancer in adolescents and young adults. Nat Rev Cancer 8(4):288–298CrossRefPubMedGoogle Scholar
  5. 232.
    Bitsko MJ, Cohen D, Dillon R, Harvey J, Krull K, Klosky JL (2015) Psychosocial late effects in pediatric cancer survivors: a report from the children’s oncology group. Pediatric blood & cancerGoogle Scholar
  6. 233.
    Children’s Oncology Group (2013) Long-term follow-up guidelines for survivors of childhood, adolescent and young adult cancers, version 4.0 Monrovia. Children’s Oncology Group, CA, Oct 2013; Available online: www.survivorshipguidelines.org
  7. 234.
    D’Angio GJ (1975) Pediatric cancer in perspective: cure is not enough. Cancer 35(S3):866–870PubMedCrossRefGoogle Scholar
  8. 235.
    Diller L, Chow EJ, Gurney JG, Hudson MM, Kadin-Lottick NS, Kawashima TI, Leisenring WM, Meacham LR, Mertens AC, Mulrooney DA (2009) Chronic disease in the childhood cancer survivor study cohort: a review of published findings. J Clin Oncol 27(14):2339–2355PubMedPubMedCentralCrossRefGoogle Scholar
  9. 236.
    Kazak AE, DeRosa BW, Schwartz LA, Hobbie W, Carlson C, Ittenbach RF, Mao JJ, Ginsberg JP (2010) Psychological outcomes and health beliefs in adolescent and young adult survivors of childhood cancer and controls. J Clin Oncol 28(12):2002–2007PubMedPubMedCentralCrossRefGoogle Scholar
  10. 237.
    Landier W et al (2015) Late effects of childhood cancer and its treatment. In: Pizzo PA, Poplack DG (eds.) Principles and practice of pediatric oncology. Wolters Kluwer HealthGoogle Scholar
  11. 238.
    Mulder RL, Kremer LC, Hudson MM, Bhatia S, Landier W, Levitt G, Constine LS, Wallace WH, van Leeuwen FE, Ronckers CM (2013) Recommendations for breast cancer surveillance for female survivors of childhood, adolescent, and young adult cancer given chest radiation: a report from the international late effects of childhood cancer guideline harmonization group. Lancet Oncol 14(13):e621–e629PubMedPubMedCentralCrossRefGoogle Scholar
  12. 239.
    Oeffinger KC, Mertens Sklar CA (2007) Chronic health conditions in adult survivors of childhood cancer. Oncol Times 29(1):26CrossRefGoogle Scholar
  13. 240.
    Oeffinger KC, Nathan PC, Kremer LC (2010) Challenges after curative treatment for childhood cancer and long-term follow up of survivors. Hematol Oncol Clin N Am 24(1):129–149CrossRefGoogle Scholar
  14. 241.
    Robison LL, Hudson MM (2014) Survivors of childhood and adolescent cancer: life-long risks and responsibilities. Nat Rev Cancer 14(1):61–70PubMedCrossRefGoogle Scholar
  15. 242.
    Zebrack BJ, Chesler MA (2002) Quality of life in childhood cancer survivors. Psycho-Oncology 11(2):132–141PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media Singapore 2016

Authors and Affiliations

  • Christina Signorelli
    • 1
    • 2
  • Joanna E. Fardell
    • 1
    • 2
  • Claire E. Wakefield
    • 1
    • 2
  • Kate Webber
    • 3
    • 4
  • Richard J. Cohn
    • 1
    • 2
    • 4
  1. 1.Discipline of Paediatrics, School of Women’s and Children’s Health, UNSW MedicineUniversity of New South WalesKensingtonAustralia
  2. 2.Kids Cancer CentreSydney Children’s Hospital (SCH)RandwickAustralia
  3. 3.Department of Medical OncologyPrince of Wales HospitalRandwickAustralia
  4. 4.National Centre for Cancer SurvivorshipUniversity of New South WalesKensingtonAustralia

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