Identifying late effects of treatment and integrating palliative care when appropriate, are increasingly recognized as important elements of childhood tumor management. Patients with CNS tumors are at high risk for mortality, and survivors have high morbidity rates related to the late effects of treatment. While intensified therapy has improved survival in patients with pediatric brain tumors (Packer et al. 1999, 2003), it has also increased the long-term consequences. Survivors may develop a spectrum of late effects ranging from subtle memory loss and cosmetic anomalies to severe neurological disabilities and recurrent neoplasms. While seemingly quite different, both palliative and late-effects care focus on improving quality of life for patients, and need to be integrated into the overall care plan.
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Anderson DM, Rennie KM, Ziegler RS, Neglia JP, Robison LR, Gurney JG (2001) Medical and neurocognitive late effects among survivors of childhood central nervous system tumors. Cancer 92:2709–19
Anderson NE (2003) Late complications in childhood central nervous system tumour survivors. Current Opinion in Neurology 16:677–683
Ater JL, Moore BD III, Francis DJ, Castillo R, Slopis J, Copeland DR (1996) Correlation of medical and neurosurgical events with neuropsychological status in children at diagnosis of astrocytoma: utilization of a neurological severity score. Journal of Child Neurology 11:462–469
Barr RD, Simpson T, Whitton A, Rush B, Furlong W, Feeny DH (1999) Health-related quality of life in survivors of tumours of the central nervous system in childhood—a preference-based approach to measurement in a cross-sectional study. European Journal of Cancer 35:248–255
Behin A, Delattre JY (2002) Neurological sequelae of radiation therapy on the nervous system. In: Schiff D, Wen PY (eds) Cancer neurology in clinical practice. Humana, Totowa, pp 173–191
Bleyer WA (1999) Epidemiologic impact of children with brain tumors. Childs Nervous System 15:758–763
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. Journal of Clinical Oncology 24:5277–5282
Brownstein CM, Mertens AC, Mitby PA, Stovall M, Qin J, Heller G, Robison LL, Sklar CA (2004) Factors that affect final height and change in height standard deviation scores in survivors of childhood cancer treated with growth hormone: a report from the childhood cancer survivor study. The Journal of Clinical Endocrinology and Metabolism 89:4422–4427
Butler RW, Hill JM, Steinherz PG, Meyers PA, Finlay JL (1994) Neuropsychologic effects of cranial irradiation, intrathe-cal methotrexate, and systemic methotrexate in childhood cancer. Journal of Clinical Oncology 12:2621–2629
Byrne J, Lewis S, Halamek L, Connelly RR, Mulvihill JJ (1989) Childhood cancer survivors' knowledge of their diagnosis and treatment. Annals of Internal Medicine 110:400–403
Carpentieri SC, Meyer EA, Delaney BL, Victoria ML, Gannon BK, Doyle JM, Kieran MW (2003) Psychosocial and behavioral functioning among pediatric brain tumor survivors. Journal of Neurooncology 63:279–287
Carroll P V, Christ ER, Sonksen PH (2000) Growth hormone replacement in adults with growth hormone deficiency: assessment of current knowledge. Trends in Endocrinology and Metabolism 11:231–238
Constine LS, Woolf PD, Cann D, Mick G, McCormick K, Rau-bertas RF, Rubin P (1993) Hypothalamic-pituitary dysfunction after radiation for brain tumors. New England Journal of Medicine 328:87–94
Contro NA, Larson J, Scofield S, Sourkes B, Cohen HJ (2004) Hospital staff and family perspectives regarding quality of pediatric palliative care. Pediatrics 114:1248–1252
Ellenberg L, McComb JG, Siegel SE, Stowe S (1987) Factors affecting intellectual outcome in pediatric brain tumor patients. Neurosurgery 21:638–644
Foreman NK, Faestel PM, Pearson J, Disabato J, Poole M, Wilk-ening G, Arenson EB, Greffe B, Thorne R (1999) Health status in 52 long-term survivors of pediatric brain tumors. Journal of Neurooncology 41:47–53
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, Hart AA, Bakker PJ, Caron HN, van Leeuwen FE (2007) Medical assessment of adverse health outcomes in long-term survivors of childhood cancer. JAMA 297:2705–2715
Gleeson HK, Shalet SM (2004) The impact of cancer therapy on the endocrine system in survivors of childhood brain tumours. Endocrine-Related Cancer 11:589–602
Goldman A (1998) ABC of palliative care. Special problems of children. BMJ 316:49–52
Grill J, Renaux VK, Bulteau C, Viguier D, Levy-Piebois C, Sainte-Rose C, Dellatolas G, Raquin MA, Jambaque I, Kalifa C (1999) Long-term intellectual outcome in children with posterior fossa tumors according to radiation doses and volumes. International Journal of Radiation Oncology, Biology, Physics 45:137–145
Gurney JG, Kadan-Lottick NS, Packer RJ, Neglia J P, Sklar CA, Punyko JA, Stovall M, Yasui Y, Nicholson HS, Wolden S, McNeil DE, Mertens AC, Robison LL (2003a) Endocrine and cardiovascular late effects among adult survivors of childhood brain tumors: Childhood Cancer Survivor Study. Cancer 97:663–673
Gurney JG, Ness KK, Stovall M, Wolden S, Punyko JA, Neglia J P, Mertens AC, Packer RJ, Robison LL, Sklar CA (2003b) Final height and body mass index among adult survivors of childhood brain cancer: childhood cancer survivor study. Journal of Clinical Endocrinology and Metabolism 88:4731–4739
Hain R, Weinstein S, Oleske J, Orloff S, Cohn S (2004) Holistic management of symptoms. In: Carter BS, Levetown M (eds) Palliative care for infants, children and adolescents: a practical handbook. Johns Hopkins University Press, Baltimore, pp 163–195
Hilden JM, Emanuel EJ, Fairclough DL, Link MP, Foley KM, Clarridge BC, Schnipper LE, Mayer RJ (2001) Attitudes and practices among pediatric oncologists regarding end-of-life care: results of the 1998 American Society of Clinical Oncology survey. Journal of Clinical Oncology 19:205–212
Horstmann E, McCabe MS, Grochow L, Yamamoto S, Rubinstein L, Budd T, Shoemaker D, Emanuel EJ, Grady C (2005) Risks and benefits of phase 1 oncology trials, 1991 through 2002. New England Journal of Medicine 352:895–904
Hudson MM, Tyc VL, Srivastava DK, Gattuso J, Quargnenti A, Crom DB, Hinds P (2002) Multi-component behavioral intervention to promote health protective behaviors in childhood cancer survivors: the protect study. Medical and Pediatric Oncology 39:2–1; discussion 2
Hudson MM, Mertens AC, Yasui Y, Hobbie W, Chen H, Gurney JG, Yeazel M, Recklitis CJ, Marina N, Robison LR, Oeffin-ger KC (2003) Health status of adult long-term survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. JAMA 290:1583–1592
Ilveskoski I, Pihko H, Sankila R, Lanning M, Perkkio M, Aari-maa T, Makipernaa A, Saarinen UM (1997) Improving outcome of malignant brain tumours in very young children: a population-based study in Finland during 1975–93. Acta Paediatrica 86:724–729
Jakacki RI, Goldwein JW, Larsen RL, Barber G, Silber JH (1993) Cardiac dysfunction following spinal irradiation during childhood. Journal of Clinical Oncology 11:1033–1038
Jemal A, Clegg LX, Ward E, Ries LA, Wu X, Jamison PM, Wingo PA, Howe HL, Anderson RN, Edwards BK (2004) Annual report to the nation on the status of cancer, 1975–2001, with a special feature regarding survival. Cancer 101:3–27
Kadan-Lottick NS, Robison LL, Gurney JG, Neglia J P, Yasui Y, Hayashi R, Hudson M, Greenberg M, Mertens AC (2002) Childhood cancer survivors' knowledge about their past diagnosis and treatment: Childhood Cancer Survivor Study. JAMA 287:1832–1839
Kao GD, Goldwein JW, Schultz DJ, Radcliffe J, Sutton L, Lange B (1994) The impact of perioperative factors on subsequent intelligence quotient deficits in children treated for medulloblastoma/posterior fossa primitive neuroectoder-mal tumors. Cancer 74:965–971
Klopfenstein KJ, Hutchison C, Clark C, Young D, Ruymann FB (2001) Variables influencing end-of-life care in children and adolescents with cancer. Journal of Pediatric Hematol-ogy/Oncology 23:481–486
Kolarik RC, Walker G, Arnold RM (2006) Pediatric resident education in palliative care: a needs assessment. Pediatrics 117:1949–1954
Korones DN (2007) Pediatric palliative care. Pediatrics in Review 28:e46–e56
Kreicbergs U, Valdimarsdottir U, Onelov E, Henter JI, Steineck G (2004) Talking about death with children who have severe malignant disease. New England Journal of Medicine 351:1175–1186
Kurzrock R, Benjamin RS (2005) Risks and benefits of phase 1 oncology trials, revisited. New England Journal of Medicine 352:930–932
Langeveld NE, Grootenhuis MA, Voute PA, de Haan RJ, van den Bos C (2003) No excess fatigue in young adult survivors of childhood cancer. European Journal of Cancer 39:204–214
Lannering B, Marky I, Lundberg A, Olsson E (1990) Long-term sequelae after pediatric brain tumors: their effect on disability and quality of life. Medical and Pediatric Oncology 18:304–310
Levy AS (2005) Brain tumors in children: evaluation and management. Current Problems in Pediatric and Adolescent Health Care 35:230–245
Livesey EA, Hindmarsh PC, Brook CG, Whitton AC, Bloom HJ, Tobias JS, Godlee JN, Britton J (1990) Endocrine disorders following treatment of childhood brain tumours. British Journal of Cancer 61:622–625
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. Journal of Clinical Oncology 23:2256–2263
Meeske KA, Patel SK, Palmer SN, Nelson MB, Parow AM (2007) Factors associated with health-related quality of life in pedi-atric cancer survivors. Pediatric Blood & Cancer 49:298–305
Mertens AC, Yasui Y, Neglia J P, Potter JD, Nesbit ME Jr, Ruc-cione K, Smithson WA, Robison LL (2001) Late mortality experience in five-year survivors of childhood and adolescent cancer: the Childhood Cancer Survivor Study. Journal of Clinical Oncology 19:3163–3172
Moe PJ, Holen A (2000) High-dose methotrexate in childhood all. Pediatric Hematology and Oncology 17:615–622
Moleski M (2000) Neuropsychological, neuroanatomical, and neurophysiological consequences of CNS chemotherapy for acute lymphoblastic leukemia. Archives of Clinical Neuropsychology 15:603–630
Moshang T Jr, Rundle AC, Graves DA, Nickas J, Johanson A, Meadows A (1996) Brain tumor recurrence in children treated with growth hormone: the National Cooperative Growth Study experience. Journal of Pediatrics 128:S4–S7
Mostow EN, Byrne J, Connelly RR, Mulvihill JJ (1991) Quality of life in long-term survivors of CNS tumors of childhood and adolescence. Journal of Clinical Oncology 9:592–599
Muirhead SE, Hsu E, Grimard L, Keene D (2002) Endocrine complications of pediatric brain tumors: case series and literature review. Pediatric Neurology 27:165–170
Mulhern RK, Hancock J, Fairclough D, Kun L (1992) Neurop-sychological status of children treated for brain tumors: a critical review and integrative analysis. Medical and Pedi-atric Oncology 20:181–191
Mulhern RK, Kepner JL, Thomas PR, Armstrong FD, Friedman HS, Kun LE (1998) Neuropsychologic functioning of survivors of childhood medulloblastoma randomized to receive conventional or reduced-dose craniospinal irradiation: a Pediatric Oncology Group study. Journal of Clinical Oncology 16:1723–1728
Nandagopal R, Laverdiere C, Mulrooney D, Hudson MM, Mea-cham L (2008) Endocrine late effects of childhood cancer therapy: a report from the Children's Oncology Group. Hormone Research 69:65–74
Nathan PC, Patel SK, Dilley K, Goldsby R, Harvey J, Jacobsen C, Kadan-Lottick N, McKinley K, Millham AK, Moore I, Okcu MF, Woodman CL, Brouwers P, Armstrong FD (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. Archives of Pediatrics and Adolescent Medicine 161:798–806
Neglia JP, Friedman DL, Yasui Y, Mertens AC, Hammond S, Stovall M, Donaldson SS, Meadows AT, Robison LL (2001) Second malignant neoplasms in five-year survivors of childhood cancer: childhood cancer survivor study. Journal of National Cancer Institute 93:618–629
Oberfield SE, Allen JC, Pollack J, New MI, Levine LS (1986) Long-term endocrine sequelae after treatment of medullo-blastoma: prospective study of growth and thyroid function. Journal of Pediatrics 108:219–223
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 (2006) Chronic health conditions in adult survivors of childhood cancer. New England Journal of Medicine 355:1572–1582
Oeffinger KC, Nathan PC, Kremer LC (2008) Challenges after curative treatment for childhood cancer and long-term follow up of survivors. Pediatric Clinics of North America 55:251–273; xiii
Ogilvy-Stuart AL, Shalet SM, Gattamaneni HR (1991) Thyroid function after treatment of brain tumors in children. Journal of Pediatrics 119:733–737
Packer RJ, Mehta M (2002) Neurocognitive sequelae of cancer treatment. Neurology 59:8–10
Packer RJ, Sutton LN, Atkins TE, Radcliffe J, Bunin GR, D'Angio G, Siegel KR, Schut L (1989) A prospective study of cognitive function in children receiving whole-brain radiotherapy and chemotherapy: 2-year results. Journal of Neurosurgery 70:707–713
Packer RJ, Goldwein J, Nicholson HS, Vezina LG, Allen JC, Ris MD, Muraszko K, Rorke LB, Wara WM, Cohen BH, Boyett JM (1999) Treatment of children with medulloblastomas with reduced-dose craniospinal radiation therapy and adjuvant chemotherapy: A Children's Cancer Group Study. Journal of Clinical Oncology 17:2127–2136
Packer RJ, Gurney JG, Punyko JA, Donaldson SS, Inskip PD, Stovall M, Yasui Y, Mertens AC, Sklar CA, Nicholson HS, Zeltzer LK, Neglia J P, Robison LL (2003) Long-term neurologic and neurosensory sequelae in adult survivors of a childhood brain tumor: childhood cancer survivor study. Journal of Clinical Oncology 21:3255–3261
Pang JW, Friedman DL, Whitton JA, Stovall M, Mertens AC, Robison LL, Weiss NS (2008) Employment status among adult survivors in the Childhood Cancer Survivor Study. Pediatric Blood & Cancer 50:104–110
Pizzo PA, Poplack DG, Bleyer WA (1979) Neurotoxicities of current leukemia therapy. Americal Journal of Pediatric Hematology & Oncology 1:127–140
Pollak KI, Arnold RM, Jeffreys AS, Alexander SC, Olsen MK, Abernethy A P, Sugg Skinner C, Rodriguez KL, Tulsky JA (2007) Oncologist communication about emotion during visits with patients with advanced cancer. Journal of Clinical Oncology 25:5748–5752
Poltorak DY, Glazer JP (2006) The development of children's understanding of death: cognitive and psychodynamic considerations. Child and Adolescent Psychiatric Clinics of North America 15:567–573
Radcliffe J, Packer RJ, Atkins TE, Bunin GR, Schut L, Goldwein JW, Sutton LN (1992) Three- and four-year cognitive outcome in children with noncortical brain tumors treated with whole-brain radiotherapy. Annals of Neurology 32:551–554
Ries LAG (1999) Childhood cancer mortality. In: Ries LAG, Smith MA, Gurney JG, Linet M, Tamra T, Young JL, Bunin GR (eds) Cancer incidence and survival among children and adolescents: United States SEER program 1975–1995, Publication no. 99-4649. NIH, Bethesda
Ris MD, Packer R, Goldwein J, Jones-Wallace D, Boyett JM (2001) Intellectual outcome after reduced-dose radiation therapy plus adjuvant chemotherapy for medulloblastoma: a Children's Cancer Group study. Journal of Clinical Oncology 19:3470–3476
Ross L, Johansen C, Dalton SO, Mellemkjaer L, Thomassen LH, Mortensen PB, Olsen JH (2003) Psychiatric hospitalizations among survivors of cancer in childhood or adolescence. New England Journal of Medicine 349:650–657
Rutter MM, Rose SR (2007) Long-term endocrine sequelae of childhood cancer. Current Opinion in Pediatrics 19:480– 487
Sahler OJ, Frager G, Levetown M, Cohn FG, Lipson MA (2000) Medical education about end-of-life care in the pediatric setting: principles, challenges, and opportunities. Pediatrics 105:575–584
Schiff D, Wen P (2006) Central nervous system toxicity from cancer therapies. Hematology/oncology Clinics of North America 20:1377–1398
Shaw EG, Rosdhal R, D'Agostino RB Jr, Lovato J, Naughton MJ, Robbins ME, Rapp SR (2006) Phase II study of donepezil in irradiated brain tumor patients: effect on cognitive function, mood, and quality of life. Journal of Clinical Oncology 24:1415–1420
Sirkia K, Saarinen UM, Ahlgren B, Hovi L (1997) Terminal care of the child with cancer at home. Acta Paediatrica 86:1125– 1130
Sklar CA, Constine LS (1995) Chronic neuroendocrinologi-cal sequelae of radiation therapy. International Journal of Radiation Oncology, Biology, Physics 31:1113–1121
Spinetta JJ, Jankovic M, Eden T, Green D, Martins AG, Wand-zura C, Wilbur J, Masera G (1999) Guidelines for assistance to siblings of children with cancer: report of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology. Medical and Pediatric Oncology 33:395–398
Steinlin M, Imfeld S, Zulauf P, Boltshauser E, Lovblad KO, RidolfiLuthy A, Perrig W, Kaufmann F (2003) Neuropsy-chological long-term sequelae after posterior fossa tumour resection during childhood. Brain 126:1998–2008
Syndikus I, Tait D, Ashley S, Jannoun L (1994) Long-term follow-up of young children with brain tumors after irradiation. International Journal of Radiation Oncology, Biology, Physics 30:781–787
Tofilon PJ, Fike JR (2000) The radioresponse of the central nervous system: a dynamic process. Radiation Research 153:357–370
von Gunten CF, Ferris FD, Emanuel LL (2000) The patient-physician relationship. Ensuring competency in end-of-life care: communication and relational skills. JAMA 284:3051– 3057
Waber DP, Tarbell NJ, Fairclough D, Atmore K, Castro R, Isquith P, Lussier F, Romero I, Carpenter PJ, Schiller M et al (1995) Cognitive sequelae of treatment in childhood acute lym-phoblastic leukemia: cranial radiation requires an accomplice. Journal of Clinical Oncology 13:2490–2496
Wheeler I (2001) Parental bereavement: the crisis of meaning. Death Studies 25:51–66
Wolfe J, Grier HE, Klar N, Levin SB, Ellenbogen JM, Salem-Schatz S, Emanuel EJ, Weeks JC (2000) Symptoms and suffering at the end of life in children with cancer. New England Journal of Medicine 342:326–333
Wusthoff CJ, Shellhaas RA, Licht DJ (2007) Management of common neurologic symptoms in pediatric palliative care: seizures, agitation, and spasticity. Pediatric Clinics in North America 54:709–733; xi
Zebrack BJ, Chesler MA (2002) Quality of life in childhood cancer survivors. Psychooncology 11:132–141
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Taggart, D., Goldsby, R., Banerjee, A. (2010). Late Effects of Treatment and Palliative Care. In: Gupta, N., Banerjee, A., Haas-Kogan, D. (eds) Pediatric CNS Tumors. Pediatric Oncology. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-540-87979-4_17
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