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Cancer-specific health-related quality of life in children with brain tumors

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Abstract

Purpose

To understand the influence of disease and treatment on the health-related quality of life (HRQOL) of children with brain tumors, compared to the HRQOL of children with other cancers, from the viewpoints of children and parents.

Methods

A total of 133 children aged 5–18 years and 165 parents of children aged 2–18 completed questionnaires of the Pediatric Quality of Life Inventory Cancer Module (Pain and Hurt, Nausea, Procedural Anxiety, Treatment Anxiety, Worry, Cognitive Problems, Perceived Physical Appearance, and Communication scales); higher scores indicate a better HRQOL. The Cancer Module scores, weighted by age and treatment status, were compared to those obtained in a previous study of children with other cancers (mostly leukemia).

Results

The weighted mean scores for Pain and Hurt (effect size d = 0.26) and Nausea (d = 0.23) from child reports and the scores for Nausea (d = 0.28) from parent reports were higher for children with brain tumors than scores for children with other cancers. The scores for Procedural Anxiety (d = −0.22) and Treatment Anxiety (d = −0.32) from parent reports were lower for parents of children with brain tumors than the scores for parents of children with other cancers. The child-reported Pain and Hurt score of the Cancer Module was higher (d = 0.29) and in less agreement (intraclass correlation coefficient = 0.43) with scores from the Brain Tumor Module, indicating that assessments completed with the Cancer Module misesteem pain and hurt problems in children with brain tumors.

Conclusions

The profiles of cancer-specific HRQOL in children with brain tumors differ from those of children with other cancers; we therefore suggest that these children receive specific psychological support.

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References

  1. Gatta, G., Corazziari, I., Magnani, C., Peris-Bonet, R., Roazzi, P., Stiller, C., et al. (2003). Childhood cancer survival in Europe. Annals of Oncology, 14(Suppl. 5), v119–v127.

    Article  PubMed  Google Scholar 

  2. Baba, S., Ioka, A., Tsukuma, H., Noda, H., Ajiki, W., & Iso, H. (2010). Incidence and survival trends for childhood cancer in Osaka, Japan, 1973–2001. Cancer Science, 101(3), 787–792.

    Article  PubMed  CAS  Google Scholar 

  3. Siegel, R., Naishadham, D., & Jemal, A. (2012). Cancer statistics, 2012. CA: A Cancer Journal for Clinicians, 62(1), 10–29.

    Google Scholar 

  4. Collins, J. J., Byrnes, M. E., Dunkel, I. J., Lapin, J., Nadel, T., Thaler, H. T., et al. (2000). The measurement of symptoms in children with cancer. Journal of Pain and Symptom Management, 19(5), 363–377.

    Article  PubMed  CAS  Google Scholar 

  5. Hedstrom, M., Haglund, K., Skolin, I., & von Essen, L. (2003). Distressing events for children and adolescents with cancer: Child, parent, and nurse perceptions. Journal of Pediatric Oncology Nursing, 20(3), 120–132.

    Article  PubMed  Google Scholar 

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

    Article  PubMed  CAS  Google Scholar 

  7. Geenen, M., Cardous-Ubbink, M., Kremer, L., van den Bos, C., van der Pal, H., Heinen, R., et al. (2007). Medical assessment of adverse health outcomes in long-term survivors of childhood cancer. JAMA, 297(24), 2705–2715.

    Article  PubMed  CAS  Google Scholar 

  8. Kamibeppu, K., Sato, I., Honda, M., Ozono, S., Sakamoto, N., Iwai, T., et al. (2010). Mental health among young adult survivors of childhood cancer and their siblings including posttraumatic growth. Journal of Cancer Survivorship, 4(4), 303–312.

    Article  PubMed  Google Scholar 

  9. Werba, B. E., Hobbie, W., Kazak, A. E., Ittenbach, R. F., Reilly, A. F., & Meadows, A. T. (2007). Classifying the intensity of pediatric cancer treatment protocols: The intensity of treatment rating scale 2.0 (ITR-2). Pediatric Blood & Cancer, 48(7), 673–677.

    Article  Google Scholar 

  10. Kazak, A. E., Hocking, M. C., Ittenbach, R. F., Meadows, A. T., Hobbie, W., DeRosa, B. W., et al. (2012). A revision of the intensity of treatment rating scale: Classifying the intensity of pediatric cancer treatment. Pediatric Blood & Cancer, 59(1), 96–99.

    Article  Google Scholar 

  11. Armstrong, G. T., Liu, Q., Yasui, Y., Neglia, J. P., Leisenring, W., Robison, L. L., et al. (2009). Late mortality among 5-year survivors of childhood cancer: A summary from the childhood cancer survivor study. Journal of Clinical Oncology, 27(14), 2328–2338.

    Article  PubMed Central  PubMed  CAS  Google Scholar 

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

    Article  PubMed  Google Scholar 

  13. Zeltzer, L. K., Recklitis, C., Buchbinder, D., Zebrack, B., Casillas, J., Tsao, J. C. I., et al. (2009). Psychological status in childhood cancer survivors: A report from the Childhood Cancer Survivor Study. Journal of Clinical Oncology, 27(14), 2396–2404.

    Article  PubMed Central  PubMed  Google Scholar 

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

    Article  PubMed Central  PubMed  Google Scholar 

  15. Palmer, S. N., Meeske, K. A., Katz, E. R., Burwinkle, T. M., & Varni, J. W. (2007). The PedsQL Brain Tumor Module: Initial reliability and validity. Pediatric Blood & Cancer, 49(3), 287–293.

    Article  Google Scholar 

  16. Bhat, S. R., Goodwin, T. L., Burwinkle, T. M., Lansdale, M. F., Dahl, G. V., Huhn, S. L., et al. (2005). Profile of daily life in children with brain tumors: An assessment of health-related quality of life. Journal of Clinical Oncology, 23(24), 5493–5500.

    Article  PubMed  Google Scholar 

  17. Meeske, K., Katz, E. R., Palmer, S. N., Burwinkle, T., & Varni, J. W. (2004). Parent proxy-reported health-related quality of life and fatigue in pediatric patients diagnosed with brain tumors and acute lymphoblastic leukemia. Cancer, 101(9), 2116–2125.

    Article  PubMed  Google Scholar 

  18. Pogorzala, M., Styczynski, J., Kurylak, A., Debski, R., Wojtkiewicz, M., & Wysocki, M. (2010). Health-related quality of life among paediatric survivors of primary brain tumours and acute leukaemia. Quality of Life Research, 19(2), 191–198.

    Article  PubMed  Google Scholar 

  19. Cella, D. F., Tulsky, D. S., Gray, G., Sarafian, B., Linn, E., Bonomi, A., et al. (1993). The Functional Assessment of Cancer Therapy scale: Development and validation of the general measure. Journal of Clinical Oncology, 11(3), 570–579.

    PubMed  CAS  Google Scholar 

  20. Aaronson, N. K., Ahmedzai, S., Bergman, B., Bullinger, M., Cull, A., Duez, N. J., et al. (1993). The European Organization for Research and Treatment of Cancer QLQ-C30: A quality-of-life instrument for use in international clinical trials in oncology. Journal of the National Cancer Institute, 85(5), 365–376.

    Article  PubMed  CAS  Google Scholar 

  21. Varni, J. W., Burwinkle, T. M., Katz, E. R., Meeske, K., & Dickinson, P. (2002). The PedsQL in pediatric cancer: Reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module. Cancer, 94(7), 2090–2106.

    Article  PubMed  Google Scholar 

  22. Weitzner, M. A., Meyers, C. A., Gelke, C. K., Byrne, K. S., Cella, D. F., & Levin, V. A. (1995). The Functional Assessment of Cancer Therapy (FACT) scale. Development of a brain subscale and revalidation of the general version (FACT-G) in patients with primary brain tumors. Cancer, 75(5), 1151–1161.

    Article  PubMed  CAS  Google Scholar 

  23. Osoba, D., Aaronson, N. K., Muller, M., Sneeuw, K., Hsu, M. A., Yung, W. K., et al. (1996). The development and psychometric validation of a brain cancer quality-of-life questionnaire for use in combination with general cancer-specific questionnaires. Quality of Life Research, 5(1), 139–150.

    Article  PubMed  CAS  Google Scholar 

  24. Sato, I., Higuchi, A., Yanagisawa, T., Mukasa, A., Ida, K., Sawamura, Y., et al. (2010). Development of the Japanese version of the Pediatric Quality of Life Inventory Brain Tumor Module. Health and Quality of Life Outcomes, 8(1), 38.

    Article  PubMed Central  PubMed  Google Scholar 

  25. Tsuji, N., Kakee, N., Ishida, Y., Asami, K., Tabuchi, K., Nakadate, H., et al. (2011). Validation of the Japanese version of the Pediatric Quality of Life Inventory (PedsQL) Cancer Module. Health and Quality of Life Outcomes, 9(1), 22.

    Article  PubMed Central  PubMed  Google Scholar 

  26. Cronbach, L. J. (1951). Coefficient alpha and the internal structure of tests. Psychometrika, 16(3), 297–334.

    Article  Google Scholar 

  27. Bartko, J. J. (1966). The intraclass correlation coefficient as a measure of reliability. Psychological Reports, 19(1), 3–11.

    Article  PubMed  CAS  Google Scholar 

  28. Cohen, J. (1988). The t test for means. In J. Cohen (Ed.), Statistical power analysis for the behavioral sciences (pp. 19–74). New York: Lawrence Erlbaum Associates.

    Google Scholar 

  29. Gurney, J. G., Davis, S., Severson, R. K., Fang, J.-Y., Ross, J. A., & Robison, L. L. (1996). Trends in cancer incidence among children in the U.S. Cancer, 78(3), 532–541.

    Article  PubMed  CAS  Google Scholar 

  30. Bernard, J. L., Bernard-Couteret, E., Coste, D., Thyss, A., Scheiner, C., Perrimond, H., et al. (1993). Childhood cancer incidence in the south-east of France: A report of the Provence-Alpes-Cote d’Azur and Corsica Regions Pediatric Cancer Registry, 1984–1991. European Journal of Cancer, 29(16), 2284–2291.

    Article  Google Scholar 

  31. Armitage, P., Berry, G., & Matthews, J. N. S. (2002). The method of weighting. In P. Armitage, G. Berry, & J. N. S. Matthews (Eds.), Statistical methods in medical research (pp. 215–218). Oxford: Blackwell Scientific Publications.

    Chapter  Google Scholar 

  32. Packer, R. J., Gajjar, A., Vezina, G., Rorke-Adams, L., Burger, P. C., Robertson, P. L., et al. (2006). Phase III study of craniospinal radiation therapy followed by adjuvant chemotherapy for newly diagnosed average-risk medulloblastoma. Journal of Clinical Oncology, 24(25), 4202–4208.

    Article  PubMed  CAS  Google Scholar 

  33. Gajjar, A., Chintagumpala, M., Ashley, D., Kellie, S., Kun, L. E., Merchant, T. E., et al. (2006). Risk-adapted craniospinal radiotherapy followed by high-dose chemotherapy and stem-cell rescue in children with newly diagnosed medulloblastoma (St Jude Medulloblastoma-96): Long-term results from a prospective, multicentre trial. Lancet Oncology, 7(10), 813–820.

    Article  PubMed  Google Scholar 

  34. Matsutani, M., & Japanese Pediatric Brain Tumor Study, G. (2001). Combined chemotherapy and radiation therapy for CNS germ cell tumors—The Japanese experience. Journal of Neuro-Oncology, 54(3), 311–316.

  35. Ullrich, N. J. (2009). Neurologic sequelae of brain tumors in children. Journal of Child Neurology, 24(11), 1446–1454.

    Article  PubMed  Google Scholar 

  36. Dobrovoljac, M., Hengartner, H., Boltshauser, E., & Grotzer, M. (2002). Delay in the diagnosis of paediatric brain tumours. European Journal of Pediatrics, 161(12), 663–667.

    Article  PubMed  Google Scholar 

  37. Hamada, Y. (2009). Nausea and vomiting. In: M. Maru, & Y. Ishida (Eds.), Pediatric oncology nursing (pp. 237–240). Tokyo: Herusu Shuppan. [In Japanese].

  38. American Society of Health-System Pharmacists. (1999). ASHP therapeutic guidelines on the pharmacologic management of nausea and vomiting in adult and pediatric patients receiving chemotherapy or radiation therapy or undergoing surgery. American Journal of Health-System Pharmacy, 56(8), 729–764.

    Google Scholar 

  39. Schwartz, C. E., & Sprangers, M. A. G. (1999). Methodological approaches for assessing response shift in longitudinal health-related quality-of-life research. Social Science and Medicine, 48(11), 1531–1548.

    Article  PubMed  CAS  Google Scholar 

  40. Sprangers, M. A. G., & Schwartz, C. E. (1999). Integrating response shift into health-related quality of life research: a theoretical model. Social Science and Medicine, 48(11), 1507–1515.

    Article  PubMed  CAS  Google Scholar 

  41. Holdsworth, M. T., Raisch, D. W., & Frost, J. (2006). Acute and delayed nausea and emesis control in pediatric oncology patients. Cancer, 106(4), 931–940.

    Article  PubMed  Google Scholar 

  42. Stuber, M. L., Kazak, A. E., Meeske, K., Barakat, L., Guthrie, D., Garnier, H., et al. (1997). Predictors of posttraumatic stress symptoms in childhood cancer survivors. Pediatrics, 100(6), 958–964.

    Article  PubMed  CAS  Google Scholar 

  43. Ishibashi, A. (1996). Four concepts that distinguish pediatric oncology care in Japan from that in the United States: Telling the diagnosis, length of hospitalization, home care, and support systems. Journal of Pediatric Oncology Nursing, 13(4), 226–231.

    Article  PubMed  CAS  Google Scholar 

  44. Izumi, M., Ozawa, M., & Hosoya, R. (2002). Focusing on posttraumatic stress of survivors of childhood cancer. Journal of Japan Pediatric Society, 106(4), 464–471. [Abstract in English].

    Google Scholar 

  45. Sato, I., Higuchi, A., Yanagisawa, T., Mukasa, A., Ida, K., Sawamura, Y., et al. (2013). Factors influencing self- and parent-reporting health-related quality of life in children with brain tumors. Quality of Life Research, 22(1), 185–201.

    Article  PubMed  Google Scholar 

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Acknowledgments

This work was supported by a Grant-in-Aid for Pediatric Cancer Treatment and Research from the CCAJ 2008 and a Grant-in-Aid for Cancer Research from the Ministry of Health, Labour and Welfare of Japan (No. 18-14) 2008.

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Correspondence to Kiyoko Kamibeppu.

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Sato, I., Higuchi, A., Yanagisawa, T. et al. Cancer-specific health-related quality of life in children with brain tumors. Qual Life Res 23, 1059–1068 (2014). https://doi.org/10.1007/s11136-013-0555-x

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