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Pediatric low-grade glioma survivors experience high quality of life

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Abstract

Purpose

The purpose of this study was to determine pediatric low-grade glioma survivors' quality of life and late morbidity including motor, sensory, and cognitive deficits.

Methods

We surveyed 49 survivors and their parents (KINDL questionnaire).

Results

Despite tumor and treatment-associated morbidity, survivors (25 boys and 24 girls, median age at diagnosis 7.8 years), but not their parents, rated their total quality of life higher than their peers. Although all survivors had some late morbidity, half of them were able to conduct their daily lives without restriction.

Conclusion

These results reflect survivors' effective coping mechanisms and underscore the difficulties of assessing quality of life in pediatric populations.

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References

  1. Kaatsch P, Rickert CH, Kühl J, Schüz J, Michaelis J (2001) Population-based epidemiologic data on brain tumors in German children. Cancer 92:3155–3164

    Article  PubMed  CAS  Google Scholar 

  2. Gajjar A, Sanford R, Heideman R, Jenkins J, Walter A, Li Y, Langston J, Muhlbauer M, Boyett J, Kun L (1997) Low-grade astrocytoma: a decade of experience at St. Jude Children's Research Hospital. J Clin Oncol 15:2792–2799

    PubMed  CAS  Google Scholar 

  3. Reddy AT, Packer RJ (1999) Chemotherapy for low-grade gliomas. Childs Nerv Syst 15:506–513

    Article  PubMed  CAS  Google Scholar 

  4. Gnekow AK, Kortmann R-D, Pietsch T, Emser A (2004) Low grade chiasmatic-hypothalamic glioma-carboplatin and vincristin chemotherapy effectively defers radiotherapy within a comprehensive treatment strategy—report from the multicenter treatment study for children and adolescents with a low grade glioma—HIT-LGG 1996—of the Society of Pediatric Oncology and Hematology (GPOH). Klin Pädiatr 216:331–342

    Article  PubMed  CAS  Google Scholar 

  5. Kortmann R-D, Timmermann B, Taylor RE, Scarzello G, Plasswilm L, Paulsen F, Jeremic B, Gnekow AK, Dieckmann K, Kay S, Bamberg M (2003) Current and future strategies in radiotherapy of childhood low-grade glioma of the brain. Strahlenther Onkol 179:509–520

    Article  PubMed  Google Scholar 

  6. 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 92:2709–2719

    Article  PubMed  CAS  Google Scholar 

  7. Hernáiz Driever P, von Hornstein S, Pietsch T, Kortmann R, Warmuth-Metz M, Emser A, Gnekow A (2010) Natural history and management of low-grade glioma in NF-1 children. J Neurooncol 100:199–207

    Article  PubMed  Google Scholar 

  8. Rutkowski S, Gnekow A, Fleischhack G, Wagner S, Calaminus G, Wolff J, Müller H, Sörensen N, Faldum A, Tatagiba M, Pietsch T, Warmuth-Metz M, Kortmann R (2006) Hirntumoren bei Kindern und Jugendlichen. Onkologe 12:533–545

    Article  Google Scholar 

  9. Benesch M, Lackner H, Sovinz P, Suppan E, Schwinger W, Eder H-G, Dornbusch HJ, Moser A, Triebl-Roth K, Urban C (2006) Late sequela after treatment of childhood low-grade gliomas: a retrospective analysis of 69 long-term survivors treated between 1983 and 2003. J Neurooncol 78:199–205

    Article  PubMed  Google Scholar 

  10. Bhat SR, Goodwin TL, Burwinkle TM, Lansdale MF, Dahl GV, Huhn SL, Gibbs IC, Donaldson SS, Rosenblum RK, Varni JW, Fisher PG (2005) Profile of daily life in children with brain tumors: an assessment of health-related quality of life. J Clin Oncol 23:5493–5500

    Article  PubMed  Google Scholar 

  11. Kortmann R-D, Timmermann B, Taylor RE, Scarzello G, Plasswilm L, Paulsen F, Jeremic B, Gnekow AK, Dieckmann K, Kay S, Bamberg M (2003) Current and future strategies in radiotherapy of childhood low-grade glioma of the brain. Strahlenther Onkol 179:585–597

    Article  PubMed  Google Scholar 

  12. Musial-Bright L, Fengler R, Henze G, Hernáiz Driever P (2010) Carboplatin and ototoxicity: hearing loss rates among survivors of childhood medulloblastoma. Childs Nerv Syst 27(3):407–413

    Article  PubMed  Google Scholar 

  13. Rueckriegel SM, Blankenburg F, Henze G, Baqué H, Driever PH (2009) Loss of fine motor function correlates with ataxia and decline of cognition in cerebellar tumor survivors. Pediatr Blood Cancer 53:424–431

    Article  PubMed  Google Scholar 

  14. Stargatt R, Rosenfeld JV, Maixner W, Ashley D (2007) Multiple factors contribute to neuropsychological outcome in children with posterior fossa tumors. Dev Neuropsychol 32:729

    Article  PubMed  Google Scholar 

  15. Steinlin M, Imfeld S, Zulauf P, Boltshauser E, Lövblad K-O, Ridolfi Lüthy A, Perrig W, Kaufmann F (2003) Neuropsychological long-term sequelae after posterior fossa tumour resection during childhood. Brain 126:1998–2008

    Article  PubMed  Google Scholar 

  16. Zuzak T, Poretti A, Drexel B, Zehnder D, Boltshauser E, Grotzer M (2008) Outcome of children with low-grade cerebellar astrocytoma: long-term complications and quality of life. Childs Nerv Syst 24(12):1447–1455

    Article  PubMed  Google Scholar 

  17. Listernick R, Charrow J, Gutmann DH (1999) Intracranial gliomas in neurofibromatosis type 1. Am J Med Genet 89:38–44

    Article  PubMed  CAS  Google Scholar 

  18. Listernick R, Louis DN, Packer RJ, Gutmann DH (1997) Optic pathway gliomas in children with neurofibromatosis 1: consensus statement from the NF1 Optic Pathway Glioma Task Force. Ann Neurol 41:143–149

    Article  PubMed  CAS  Google Scholar 

  19. Gurney JG, Kadan-Lottick NS, Packer RJ, Neglia JP, Sklar CA, Punyko JA, Stovall M, Yasui Y, Nicholson HS, Wolden S, McNeil DE, Mertens AC, Robison LL (2003) Endocrine and cardiovascular late effects among adult survivors of childhood brain tumors. Cancer 97:663–673

    Article  PubMed  Google Scholar 

  20. Taphoorn MJ, Schiphorst AK, Snoek FJ, Lindeboom J, Wolbers JG, Karim AB, Huijgens PC, Heimans JJ (1994) Cognitive functions and quality of life in patients with low-grade gliomas: the impact of radiotherapy. Ann Neurol 36:48–54

    Article  PubMed  CAS  Google Scholar 

  21. Beebe DW, Ris MD, Armstrong FD, Fontanesi J, Mulhern R, Holmes E, Wisoff JH (2005) Cognitive and adaptive outcome in low-grade pediatric cerebellar astrocytomas: evidence of diminished cognitive and adaptive functioning in National Collaborative Research Studies (CCG 9891/POG 9130). J Clin Oncol 23:5198–5204

    Article  PubMed  Google Scholar 

  22. Cappelli C, Grill J, Raquin M, Pierre-Kahn A, Lellouch-Tubiana A, Terrier-Lacombe M-J, Habrand J-L, Couanet D, Brauner R, Rodriguez D, Hartmann O, Kalifa C (1998) Long term follow up of 69 patients treated for optic pathway tumours before the chemotherapy era. Arch Dis Child 79:334–338

    Article  PubMed  CAS  Google Scholar 

  23. Fouladi M, Gilger E, Kocak M, Wallace D, Buchanan G, Reeves C, Robbins N, Merchant T, Kun LE, Khan R, Gajjar A, Mulhern R (2005) Intellectual and functional outcome of children 3 years old or younger who have CNS malignancies. J Clin Oncol 23:7152–7160

    Article  PubMed  Google Scholar 

  24. Merchant TE, Conklin HM, Wu S, Lustig RH, Xiong X (2009) Late effects of conformal radiation therapy for pediatric patients with low-grade glioma: prospective evaluation of cognitive, endocrine, and hearing deficits. J Clin Oncol 27:3691–3697

    Article  PubMed  Google Scholar 

  25. Pollack IF, Claassen D, al-Shboul Q, Janosky JE, Deutsch M (1995) Low-grade gliomas of the cerebral hemispheres in children: an analysis of 71 cases. J Neurosurg 82:536–547

    Article  PubMed  CAS  Google Scholar 

  26. Aarsen FK, Paquier PF, Arts W-F, Van Veelen M-L, Michiels E, Lequin M, Catsman-Berrevoets CE (2009) Cognitive deficits and predictors 3 years after diagnosis of a pilocytic astrocytoma in childhood. J Clin Oncol 27:3526–3532

    Article  PubMed  Google Scholar 

  27. Calaminus G, Kiebert G (1999) Studies on health-related quality of life in childhood cancer in the European setting: an overview. Int J Cancer Suppl 12:83–86

    Article  PubMed  CAS  Google Scholar 

  28. Calaminus G, Langer T, Willich N, Beck JD (2000) Lebensqualität und Spätfolgen bei Kindern und Jugendlichen mit Krebserkrankungen. Onkologe 6:868–877

    Article  Google Scholar 

  29. Ness KK, Mertens AC, Hudson MM, Wall MM, Leisenring WM, Oeffinger KC, Sklar CA, Robison LL, Gurney JG (2005) Limitations on physical performance and daily activities among long-term survivors of childhood cancer. Ann Intern Med 143:639–647

    PubMed  Google Scholar 

  30. Bullinger M, Hasford J (1991) Evaluating quality-of-life measures for clinical trials in Germany. Control Clin Trials 12:91S–105S

    Article  PubMed  CAS  Google Scholar 

  31. Eiser C, Morse R (2001) A review of measures of quality of life for children with chronic illness. Arch Dis Child 84:205–211

    Article  PubMed  CAS  Google Scholar 

  32. Pukrop R, Möller H-J, Saß H, Sauer H, Klosterkötter J, Czernik A, Krausz M, Stieglitz R-D, Lambert M, Matthies H, Schaub A, Woschnik M, Wulfinghoff F, Steinmeyer EM (1999) Das konstrukt lebensqualität: metaanalytische validierung und die entwicklung eines modularen erhebungssystems. Nervenarzt 70:41–53

    Article  PubMed  CAS  Google Scholar 

  33. Ravens-Sieberer U, Bullinger M (1998) Assessing health-related quality of life in chronically ill children with the German KINDL: first psychometric and content analytical results. Qual Life Res 7:399–407

    Article  PubMed  CAS  Google Scholar 

  34. Heimans JJ, Taphoorn MJB (2002) Impact of brain tumour treatment on quality of life. J Neurol 249:955–960

    Article  PubMed  Google Scholar 

  35. Kiebert GM, Curran D, Aaronson NK, Bolla M, Menten J, Rutten EHJM, Nordman E, Silvestre ME, Pierart M, Karim ABMF (1998) Quality of life after radiation therapy of cerebral low-grade gliomas of the adult: results of a randomised phase III trial on dose response (EORTC trial 22844). Eur J Cancer 34:1902–1909

    Article  PubMed  CAS  Google Scholar 

  36. Klein M, Heimans JJ, Aaronson NK, van der Ploeg HM, Grit J, Muller M, Postma TJ, Mooij JJ, Boerman RH, Beute GN, Ossenkoppele GJ, van Imhoff GW, Dekker AW, Jolles J, Slotman BJ, Struikmans H, Taphoorn MJB (2002) Effect of radiotherapy and other treatment-related factors on mid-term to long-term cognitive sequelae in low-grade gliomas: a comparative study. Lancet 360:1361–1368

    Article  PubMed  CAS  Google Scholar 

  37. North CA, North RB, Epstein JA, Piantadosi S, Wharam MD (1990) Low-grade cerebral astrocytomas: survival and quality of life after radiation therapy. Cancer 66:6–14

    Article  PubMed  CAS  Google Scholar 

  38. Reijneveld JC, Sitskoorn MM, Klein M, Nuyen J, Taphoorn MJB (2001) Cognitive status and quality of life in patients with suspected versus proven low-grade gliomas. Neurology 56:618–623

    PubMed  CAS  Google Scholar 

  39. Cardarelli C, Cereda C, Masiero L, Viscardi E, Faggin R, Laverda A, Bisogno G, Perilongo G (2006) Evaluation of health status and health-related quality of life in a cohort of Italian children following treatment for a primary brain tumor. Pediatr Blood Cancer 46:637–644

    Article  PubMed  Google Scholar 

  40. Hudson MM, Mertens AC, Yasui Y, Hobbie W, Chen H, Gurney JG, Yeazel M, Recklitis CJ, Marina N, Robison LR, Oeffinger KC (2003) Health status of adult long-term survivors of childhood cancer: a report from the childhood cancer survivor study. JAMA 290:1583–1592

    Article  PubMed  CAS  Google Scholar 

  41. Maunsell E, Pogany L, Barrera M, Shaw AK, Speechley KN (2006) Quality of life among long-term adolescent and adult survivors of childhood cancer. J Clin Oncol 24:2527–2535

    Article  PubMed  Google Scholar 

  42. Aarsen FK, Paquier PF, Reddingius RE, Streng IC, Arts W-FM, Evera-Preesman M, Catsman-Berrevoets CE (2006) Functional outcome after low-grade astrocytoma treatment in childhood. Cancer 106:396–402

    Article  PubMed  Google Scholar 

  43. Pompili A, Caperle M, Pace A, Ramazzotti V, Raus L, Jandolo B, Occhipinti E (2002) Quality-of-life assessment in patients who had been surgically treated for cerebellar pilocytic astrocytoma in childhood. J Neurosurg 96:229–234

    Article  PubMed  Google Scholar 

  44. Rutkowski S, Fleischhack G (2008) Medulloblastome, primitiv neuroektodermale Tumoren und Ependymome. Monatsschr Kinderheilkd 156:1187–1193

    Article  Google Scholar 

  45. Ravens-Sieberer U, Görtler E, Bullinger M (2000) Subjektive Gesundheit und Gesundheitsverhalten von Kindern und Jugendlichen–Eine Befragung Hamburger Schüler im Rahmen der schulärztliche Untersuchung. Gesundheitswesen 62:148–155

    Article  PubMed  CAS  Google Scholar 

  46. Ravens-Sieberer U, Redegeld M, Bauer C-P, Mayer H, Stachow R, Kiosz D, van Egmond-Fröhlich B, Rempis R, Kraft D, Bullinger M (2005) Lebensqualität chronisch kranker Kinder und Jugendlicher in der Rehabilitation. Z Med Psychol 14(1):5–12

    Google Scholar 

  47. Cieza A, Ravens-Sieberer U (2000) Lebensqualität und Gesundheitsökonomie in der Medizin: Konzepte, Methoden, Anwendung. Ecomed, Landsberg

    Google Scholar 

  48. Rajmil L, Herdman M, Fernandez de Sanmamed M-J, Detmar S, Bruil J, Ravens-Sieberer U, Bullinger M, Simeoni M-C, Auquier P (2004) Generic health-related quality of life instruments in children and adolescents: a qualitative analysis of content. J Adolesc Health 34:37–45

    Article  PubMed  Google Scholar 

  49. Ravens-Sieberer U, Ellert U, Erhart M (2007) Gesundheitsbezogene Lebensqualität von Kindern und Jugendlichen in Deutschland. Bundesgesundheitsbl 50:810–818

    Article  CAS  Google Scholar 

  50. Rankin J (1957) Cerebral vascular accidents in patients over the age of 60. II. Prognosis. Scott Med J 2:200–215

    PubMed  CAS  Google Scholar 

  51. van Swieten JC, Koudstaal PJ, Visser MC, Schouten HJ, van Gijn J (1988) Interobserver agreement for the assessment of handicap in stroke patients. Stroke 19:604–607

    Article  PubMed  Google Scholar 

  52. Hirsch JF, Renier D, Czernichow P, Benveniste L, Pierre-Kahn A (1979) Medulloblastoma in childhood. Survival and functional results. Acta Neurochir 48:1–15

    Article  CAS  Google Scholar 

  53. LeBaron S, Zeltzer PM, Zeltzer LK, Scott SE, Marlin AE (1988) Assessment of quality of survival in children with medulloblastoma and cerebellar astrocytoma. Cancer 62:1215–1222

    Article  PubMed  CAS  Google Scholar 

  54. Mulhern RK, Merchant TE, Gajjar A, Reddick WE, Kun LE (2004) Late neurocognitive sequelae in survivors of brain tumours in childhood. Lancet Oncol 5:399–408

    Article  PubMed  Google Scholar 

  55. Riva D, Pantaleoni C, Milani N, Belani FF (1989) Impairment of neuropsychological functions in children with medulloblastomas and astrocytomas in the posterior fossa. Childs Nerv Syst 5:107–110

    Article  PubMed  CAS  Google Scholar 

  56. Klein M, Engelberts NHJ, van der Ploeg HM, van der Aaronson NK, Baaijen H, Vandertop WP, Muller M, Postma TJ, Heimans JJ, Kasteleijn-Nolst Trenité DG (2003) Epilepsy in low-grade gliomas: the impact on cognitive function and quality of life. Ann Neurol 54:514–520

    Article  PubMed  Google Scholar 

  57. Taphoorn MJ, Heimans JJ, Snoek FJ, Lindeboom J, Oosterink B, Wolbers JG, Karim AB (1992) Assessment of quality of life in patients treated for low-grade glioma: a preliminary report. J Neurol Neurosurg Psychiatry 55:372–376

    Article  PubMed  CAS  Google Scholar 

  58. Weitzner MA, Meyers CA (1997) Cognitive functioning and quality of life in malignant glioma patients: a review of the literature. Psychooncology 6:169–177

    Article  PubMed  CAS  Google Scholar 

  59. Maher CO, Raffel C (2004) Neurosurgical treatment of brain tumors in children. Pediatr Clin North Am 51:327–357

    Article  PubMed  Google Scholar 

  60. Zebrack BJ, Chesler MA (2002) Quality of life in childhood cancer survivors. Psychooncology 11:132–141

    Article  PubMed  Google Scholar 

  61. Addington-Hall J, Kalra L (2001) Who should measure quality of life? BMJ 322:1417–1420

    Article  PubMed  CAS  Google Scholar 

  62. Woodgate RL, Degner LF (2003) Expectations and beliefs about children's cancer symptoms: perspectives of children with cancer and their families. Oncol Nurs Forum 30:479–491

    Article  PubMed  Google Scholar 

  63. Carr AJ, Gibson B, Robinson PG (2001) Is quality of life determined by expectations or experience? BMJ 322:1240–1243

    Article  PubMed  CAS  Google Scholar 

  64. Daig I, Lehmann A (2007) Verfahren zur Messung der Lebensqualität. Procedures to measure quality of life. Z Med Psychol 16:5–23

    Google Scholar 

  65. Sprangers MAG, Tempelaar R, van den Heuvel WJA, de Haes HCJM (2002) Explaining quality of life with crisis theory. Psychooncology 11:419–426

    Article  PubMed  Google Scholar 

  66. Breetvelt IS, Van Dam FS (1991) Underreporting by cancer patients: the case of response-shift. Soc Sci Med 32:981–987

    Article  PubMed  CAS  Google Scholar 

  67. Lynn Snow A, Cook KF, Lin P-S, Morgan RO, Magaziner J (2005) Proxies and other external raters: methodological considerations. Health Serv Res 40:1676–1693

    Article  PubMed  CAS  Google Scholar 

  68. Sprangers MA (1996) Response-shift bias: a challenge to the assessment of patients' quality of life in cancer clinical trials. Cancer Treat Rev 22(A):55–62

    Article  PubMed  Google Scholar 

  69. Sprangers MA, Schwartz CE (1999) The challenge of response shift for quality-of-life-based clinical oncology research. Ann Oncol 10:747–749

    Article  PubMed  CAS  Google Scholar 

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Authors and Affiliations

  1. Department of Pediatric Oncology and Hematology, Charité-Universitätsmedizin Berlin, Augustenburger Platz 1, 13353, Berlin, Germany

    Lindy Musial-Bright, Louisa Panteli & Pablo Hernáiz Driever

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  1. Lindy Musial-Bright
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  2. Louisa Panteli
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  3. Pablo Hernáiz Driever
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Correspondence to Pablo Hernáiz Driever.

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Musial-Bright, L., Panteli, L. & Hernáiz Driever, P. Pediatric low-grade glioma survivors experience high quality of life. Childs Nerv Syst 27, 1895–1902 (2011). https://doi.org/10.1007/s00381-011-1467-0

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