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Considering quality of life for children with cancer: a systematic review of patient-reported outcome measures and the development of a conceptual model

  • Pediatric QOL Special Section
  • Published:
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Abstract

Objectives

An appraisal of pediatric cancer-specific quality-of-life (QOL) instruments revealed a lack of clarity about what constitutes QOL in this population. This study addresses this concern by identifying the concepts that underpin the construct of QOL as determined by a content analysis of all patient-reported outcome (PRO) instruments used in childhood cancer research.

Methods

A systematic review was performed of key databases (i.e., MEDLINE, CINAHL, PsychINFO) to identify studies of QOL in children with cancer. A content analysis process was used to code and categorize all items from generic and cancer-specified PRO instruments. Our objective was to provide clarification regarding the conceptual underpinnings of these instruments, as well as to help inform the development of theory and contribute to building a conceptual framework of QOL for children with cancer.

Results

A total of 6,013 English language articles were screened, identifying 148 studies. Ten generic and ten cancer-specific PRO instruments provided 957 items. Content analysis led to the identification of four major domains of QOL (physical, psychological, social, and general health), with 11 subdomains covering 98 different concepts. While all instruments reflected items relating to the broader domains of QOL, there was substantial heterogeneity in terms of the content and variability in the distribution of items.

Conclusions

This systematic review and the proposed model represent a useful starting point in the critical appraisal of the conceptual underpinnings of PRO instruments used in pediatric oncology and contribute to the need to place such tools under a critical, yet reflective and analytical lens.

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References

  1. Canada C. C. S. a. N. C. I. o. (2012). Canadian cancer statistics. Resource document. www.cancer.ca/statistics and www.ncic.cancer.ca. Accessed January 01, 2013.

  2. Geenen, M. M., Cardous-Ubbink, M. C., Kremer, L. C., van den Bos, C., van der Pal, H. J., Heinen, R. C., et al. (2007). Medical assessment of adverse health outcomes in long-term survivors of childhood cancer. JAMA, 297(24), 2705–2715. doi:10.1001/jama.297.24.2705.

    CAS  PubMed  Google Scholar 

  3. Mertens, A. C., Yasui, Y., Neglia, J. P., Potter, J. D., Nesbit, M. E., Jr, Ruccione, K., et al. (2001). Late mortality experience in five-year survivors of childhood and adolescent cancer: The Childhood Cancer Survivor Study. Journal of Clinical Oncology, 19(13), 3163–3172.

    CAS  PubMed  Google Scholar 

  4. Moller, T. R., Garwicz, S., Barlow, L., Falck Winther, J., Glattre, E., Olafsdottir, G., et al. (2001). Decreasing late mortality among five-year survivors of cancer in childhood and adolescence: A population-based study in the Nordic countries. Journal of Clinical Oncology, 19(13), 3173–3181.

    CAS  PubMed  Google Scholar 

  5. Eiser, C., & Morse, R. (2001). Quality-of-life measures in chronic diseases of childhood. Health Technology Assessment, 5(4), 1–157.

    CAS  PubMed  Google Scholar 

  6. Eiser, C., & Morse, R. (2001). A review of measures of quality of life for children with chronic illness. Archives of Disease in Childhood, 84(3), 205–211.

    CAS  PubMed Central  PubMed  Google Scholar 

  7. Testa, M. A., & Simonson, D. C. (1996). Assessment of quality-of-life outcomes. New England Journal of Medicine, 334(13), 835–840. doi:10.1056/NEJM199603283341306.

    CAS  PubMed  Google Scholar 

  8. Cummins, R. A. (1997). Assessing quality of life. In R. I. Brown (Ed.), Quality of life for people with disabilities (2nd ed., pp. 116–150). United Kingdom: Stanley Thornes Ltd.

    Google Scholar 

  9. Renwick, R., Brown, I., & Raphael, D. (2000). Person centred quality of life: Canadian contributions to an international understanding. In K. D. Keith & R. Schalock (Eds.), Cross-cultural perspectives on quality of life (pp. 5–21). Washington, DC: American Association on Mental Retardation.

    Google Scholar 

  10. Taillefer, M., Dupuis, G., Roberger, M., & Le May, S. (2003). Health-related quality of life models: Systematic review of the literature. Social Indicators Research, 64, 293–323.

    Google Scholar 

  11. Moons, P., Budts, W., & De Geest, S. (2006). Critique on the conceptualisation of quality of life: A review and evaluation of different conceptual approaches. International Journal of Nursing Studies, 43(7), 891–901. doi:10.1016/j.ijnurstu.2006.03.015.

    PubMed  Google Scholar 

  12. Post, M. W., de Witte, L. P., & Schrijvers, A. J. (1999). Quality of life and the ICIDH: Towards an integrated conceptual model for rehabilitation outcomes research. Clinical Rehabilitation, 13(1), 5–15.

    CAS  PubMed  Google Scholar 

  13. WHO. (1948). World Health Organization Constitution. Geneva: WHO.

    Google Scholar 

  14. Davis, E., Waters, E., Mackinnon, A., Reddihough, D., Graham, H. K., Mehmet-Radji, O., et al. (2006). Paediatric quality of life instruments: A review of the impact of the conceptual framework on outcomes. Developmental Medicine and Child Neurology, 48(4), 311–318. doi:10.1017/S0012162206000673.

    PubMed  Google Scholar 

  15. Arnold, R., Ranchor, A. V., Sanderman, R., Kempen, G. I., Ormel, J., & Suurmeijer, T. P. (2004). The relative contribution of domains of quality of life to overall quality of life for different chronic diseases. Quality of Life Research, 13(5), 883–896.

    CAS  PubMed  Google Scholar 

  16. Rajmil, L., Herdman, M., Fernandez de Sanmamed, M. J., Detmar, S., Bruil, J., Ravens-Sieberer, U., et al. (2004). Generic health-related quality of life instruments in children and adolescents: A qualitative analysis of content. Journal of Adolescent Health, 34(1), 37–45. doi:S1054139X03002490.

    Google Scholar 

  17. Solans, M., Pane, S., Estrada, M. D., Serra-Sutton, V., Berra, S., Herdman, M., et al. (2008). Health-related quality of life measurement in children and adolescents: A systematic review of generic and disease-specific instruments. Value Health, 11(4), 742–764. doi:10.1111/j.1524-4733.2007.00293.x.

    PubMed  Google Scholar 

  18. Creeman, J., Eiser, E., & Blades, M. (2006). Characteristics of health-related self-report measures for children aged three to eight years: A review of the literature. Qualitative Life Research, 15, 739–754.

    Google Scholar 

  19. De Civita, M., Regier, D., Alamgir, A. H., Anis, A. H., FitzGerald, M. J., & Marra, C. A. (2006). Evaluating health-related-quality-of-life studies in paediatric populations. Some conceptual, methodological and developmental considerations and recent applications. Pharmacoeconomics, 23(7), 659–685.

    Google Scholar 

  20. Harding, L. (2001). Children’s quality of life assessments: A review of generic and health related quality of life measures completed by children and adolescents. Clinical Psychology and Psychotherapy, 8(2), 79–96.

    Google Scholar 

  21. Klassen, A. F., Strohm, S. J., Maurice-Stam, H., & Grootenhuis, M. A. (2010). Quality of life questionnaires for children with cancer and childhood cancer survivors: A review of the development of available measures. Supportive Care in Cancer, 18(9), 1207–1217. doi:10.1007/s00520-009-0751-y.

    PubMed  Google Scholar 

  22. Matza, L. S., Swensen, A. R., Flood, E. M., Secnik, K., & Leidy, N. K. (2004). Assessment of health-related quality of life in children: A review of conceptual, methodological, and regulatory issues. Value Health, 7(1), 79–92. doi:10.1111/j.1524-4733.2004.71273.x.

    PubMed  Google Scholar 

  23. Pickard, A. S., Topfer, L. A., & Feeny, D. H. (2004). A structured review of studies on health-related quality of life and economic evaluation in pediatric acute lymphoblastic leukemia. Journal of the National Cancer Institute. Monographs, 33, 102–125. doi:10.1093/jncimonographs/lgh002.

    PubMed  Google Scholar 

  24. Ravens-Sieberer, U., Erhart, M., Wille, N., Wetzel, R., Nickel, J., & Bullinger, M. (2006). Generic health-related quality-of-life assessment in children and adolescents: Methodological considerations. Pharmacoeconomics, 24(12), 1199–1220.

    PubMed  Google Scholar 

  25. Burra, P., & De Bona, M. (2007). Quality of life following organ transplantation. Transplant International, 20(5), 397–409. doi:10.1111/j.1432-2277.2006.00440.x.

    PubMed  Google Scholar 

  26. Fayed, N., Schiariti, V., Bostan, C., Cieza, A., & Klassen, A. (2011). Health status and QOL instruments used in childhood cancer research: Deciphering conceptual content using World Health Organization definitions. Quality of Life Research, 20(8), 1247–1258. doi:10.1007/s11136-011-9851-5.

    PubMed  Google Scholar 

  27. Fayed, N., de Camargo, O. K., Kerr, E., Rosenbaum, P., Dubey, A., Bostan, C., et al. (2012). Generic patient-reported outcomes in child health research: A review of conceptual content using World Health Organization definitions. Developmental Medicine and Child Neurology, 54(12), 1085–1095. doi:10.1111/j.1469-8749.2012.04393.x.

    PubMed  Google Scholar 

  28. www.nihpromis.org/documents.

  29. Aarsen, F. K., Paquier, P. F., Reddingius, R. E., Streng, I. C., Arts, W. F., Evera-Preesman, M., et al. (2006). Functional outcome after low-grade astrocytoma treatment in childhood. Cancer, 106(2), 396–402. doi:10.1002/cncr.21612.

    PubMed  Google Scholar 

  30. af Sandeberg, M., Johansson, E. M., Hagell, P., & Wettergren, L. (2010). Psychometric properties of the DISABKIDS Chronic Generic Module (DCGM-37) when used in children undergoing treatment for cancer. Health and Quality of Life Outcomes, 8, 109. doi:10.1186/1477-7525-8-109.

    PubMed Central  PubMed  Google Scholar 

  31. Armstrong, F. D., Toledano, S. R., Miloslavich, K., Lackman-Zeman, L., Levy, J. D., Gay, C. L., et al. (1999). The Miami pediatric quality of life questionnaire: Parent scale. International Journal of Cancer Supplement, 12, 11–17. doi:10.1002/(SICI)1097-0215(1999)83:12+<11:AID-IJC4>3.0.CO;2-8.

    CAS  Google Scholar 

  32. Baggott, C. R., Dodd, M., Kennedy, C., Marina, N., Matthay, K. K., Cooper, B., et al. (2011). An evaluation of the factors that affect the health-related quality of life of children following myelosuppressive chemotherapy. Supportive Care in Cancer, 19(3), 353–361. doi:10.1007/s00520-010-0824-y.

    PubMed Central  PubMed  Google Scholar 

  33. Banks, B. A., Barrowman, N. J., & Klaassen, R. (2008). Health-related quality of life: Changes in children undergoing chemotherapy. Journal of Pediatric Hematology/oncology, 30(4), 292–297. doi:10.1097/MPH.0b013e3181647bda.

    PubMed  Google Scholar 

  34. Barakat, L. P., Marmer, P. L., & Schwartz, L. A. (2010). Quality of life of adolescents with cancer: Family risks and resources. Health and Quality of Life Outcomes, 8, 63. doi:10.1186/1477-7525-8-631477-7525-8-63.

    PubMed Central  PubMed  Google Scholar 

  35. Barr, R., Pai, M., Weitzman, S., Feeny, D., Furlong, W., Rosenbaum, P., et al. (1994). A multiattribute approach to health-status measurement and clinical management illustrated by an application to brain-tumors in childhood. International Journal of Oncology, 4(3), 639–648.

    CAS  PubMed  Google Scholar 

  36. Barr, R. D., Chalmers, D., De Pauw, S., Furlong, W., Weitzman, S., & Feeny, D. (2000). Health-related quality of life in survivors of Wilms’ tumor and advanced neuroblastoma: A cross-sectional study. Journal of Clinical Oncology, 18(18), 3280–3287.

    CAS  PubMed  Google Scholar 

  37. Barr, R. D., Silva, A., Wong, M., Frid, W., Posgate, S., & Browne, G. (2010). A comparative assessment of attendance and nonattendance at Camp Trillium by children with cancer and their families; including their utilization of health and social services. Journal of Pediatric Hematology/oncology, 32(5), 358–365. doi:10.1097/MPH.0b013e3181dccc1f.

    PubMed  Google Scholar 

  38. Barr, R. D., Simpson, T., Whitton, A., Rush, B., Furlong, W., & Feeny, D. H. (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(2), 248–255. doi:S0959804998003669.

    Google Scholar 

  39. Bekkering, W. P., Vliet Vlieland, T. P., Koopman, H. M., Schaap, G. R., Schreuder, H. W., Beishuizen, A., et al. (2010). Quality of life in young patients after bone tumor surgery around the knee joint and comparison with healthy controls. Pediatric Blood and Cancer, 54(5), 738–745. doi:10.1002/pbc.22439.

    PubMed  Google Scholar 

  40. Benesch, M., Spiegl, K., Winter, A., Passini, A., Lackner, H., Moser, A., et al. (2009). A scoring system to quantify late effects in children after treatment for medulloblastoma/ependymoma and its correlation with quality of life and neurocognitive functioning. Childs Nervous System, 25(2), 173–181. doi:10.1007/s00381-008-0742-1.

    Google Scholar 

  41. 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. doi:10.1200/JCO.2005.10.190.

    PubMed  Google Scholar 

  42. Bhatia, S., Jenney, M. E., Bogue, M. K., Rockwood, T. H., Feusner, J. H., Friedman, D. L., et al. (2002). The Minneapolis–Manchester quality of life instrument: Reliability and validity of the adolescent form. Journal of Clinical Oncology, 20(24), 4692–4698.

    PubMed  Google Scholar 

  43. Bhatia, S., Jenney, M. E., Wu, E., Bogue, M. K., Rockwood, T. H., Feusner, J. H., et al. (2004). The Minneapolis–Manchester quality of life instrument: Reliability and validity of the youth form. Journal of Pediatrics, 145(1), 39–46. doi:10.1016/j.jpeds.2004.02.034.

    PubMed  Google Scholar 

  44. Bijttebier, P., Bercruysse, T., Vertommen, H., Van Gool, S. W., Uyttebroech, A., & Brock, P. (2001). New evidence on the reliability and validity of the Pediatric Oncology Quality of Life Scale. Psychology and Health, 16(4), 461–469.

    Google Scholar 

  45. Braam, K. I., van Dijk, E. M., Veening, M. A., Bierings, M. B., Merks, J. H., Grootenhuis, M. A., et al. (2010). Design of the quality of life in motion (QLIM) study: A randomized controlled trial to evaluate the effectiveness and cost-effectiveness of a combined physical exercise and psychosocial training program to improve physical fitness in children with cancer. BMC Cancer, 10, 624. doi:10.1186/1471-2407-10-6241471-2407-10-624.

    PubMed Central  PubMed  Google Scholar 

  46. Calaminus, G., Weinspach, S., Teske, C., & Gobel, U. (2000). Quality of life in children and adolescents with cancer. First results of an evaluation of 49 patients with the PEDQOL questionnaire. Klinische Padiatrie, 212(4), 211–215. doi:10.1055/s-2000-9679.

    CAS  PubMed  Google Scholar 

  47. Carpentier, M. Y., Mullins, L. L., Elkin, T. D., & Wolfe-Christensen, C. (2008). Predictors of health-harming and health-protective behaviors in adolescents with cancer. Pediatric Blood and Cancer, 51(4), 525–530. doi:10.1002/pbc.21605.

    PubMed  Google Scholar 

  48. Chang, P. C., & Yeh, C. H. (2005). Agreement between child self-report and parent proxy-report to evaluate quality of life in children with cancer. Psychooncology, 14(2), 125–134. doi:10.1002/pon.828.

    PubMed  Google Scholar 

  49. Chiang, Y. C., Hinds, P. S., Yeh, C. H., & Yang, C. P. (2008). Development and psychometric testing of a Chinese version of the Fatigue Scale-Children in Taiwan. Journal of Clinical Nursing, 17(9), 1201–1210. doi:10.1111/j.1365-2702.2007.02138.xJCN2138.

    PubMed  Google Scholar 

  50. Chiou, S. S., Jang, R. C., Liao, Y. M., & Yang, P. (2010). Health-related quality of life and cognitive outcomes among child and adolescent survivors of leukemia. Supportive Care in Cancer, 18(12), 1581–1587. doi:10.1007/s00520-009-0781-5.

    PubMed  Google Scholar 

  51. Chirivella, S., Rajappa, S., Sinha, S., Eden, T., & Barr, R. D. (2009). Health-related quality of life among children with cancer in Hyderabad, India. Indian Journal of Pediatric, 76(12), 1231–1235. doi:10.1007/s12098-009-0262-3.

    Google Scholar 

  52. Cox, C. L., Lensing, S., Rai, S. N., Hinds, P., Burghen, E., & Pui, C. H. (2005). Proxy assessment of quality of life in pediatric clinical trials: Application of the Health Utilities Index 3. Quality of Life Research, 14(4), 1045–1056.

    PubMed  Google Scholar 

  53. De Bolle, M., De Clercq, B., De Fruyt, F., & Benoit, Y. (2008). Self- and parental perspectives on quality of life in children with cancer. Journal of Psychosocial Oncology, 26(2), 35–47.

    PubMed  Google Scholar 

  54. De Clercq, B., De Fruyt, F., Koot, H. M., & Benoit, Y. (2004). Quality of life in children surviving cancer: A personality and multi-informant perspective. Journal of Pediatric Psychology, 29(8), 579–590. doi:10.1093/jpepsy/jsh060.

    PubMed  Google Scholar 

  55. de Vries, M. A., van Litsenburg, R. R., Huisman, J., Grootenhuis, M. A., Versluys, A. B., Kaspers, G. J., et al. (2008). Effect of dexamethasone on quality of life in children with acute lymphoblastic leukaemia: A prospective observational study. Health and Quality of Life Outcomes, 6, 103. doi:10.1186/1477-7525-6-103.

    PubMed Central  PubMed  Google Scholar 

  56. Dhall, G., Grodman, H., Ji, L., Sands, S., Gardner, S., Dunkel, I. J., et al. (2008). Outcome of children less than three years old at diagnosis with non-metastatic medulloblastoma treated with chemotherapy on the “Head Start” I and II protocols. Pediatric Blood and Cancer, 50(6), 1169–1175. doi:10.1002/pbc.21525.

    PubMed  Google Scholar 

  57. Eiser, C. (2007). Beyond survival: Quality of life and follow-up after childhood cancer. Journal of Pediatric Psychology, 32(9), 1140–1150. doi:10.1093/jpepsy/jsm052.

    PubMed  Google Scholar 

  58. Eiser, C., Cotter, I., Oades, P., Seamark, D., & Smith, R. (1999). Health-related quality-of-life measures for children. International Journal of Cancer Supplement, 12, 87–90. doi:10.1002/(SICI)1097-0215(1999)83:12+<87:AID-IJC16>3.0.CO;2-O.

    CAS  Google Scholar 

  59. Eiser, C., Davies, H., Jenney, M., Stride, C., & Glaser, A. (2006). HRQOL implications of treatment with dexamethasone for children with acute lymphoblastic leukemia (ALL). Pediatric Blood and Cancer, 46(1), 35–39. doi:10.1002/pbc.20432.

    PubMed  Google Scholar 

  60. Eiser, C., Eiser, J. R., & Greco, V. (2004). Surviving childhood cancer: Quality of life and parental regulatory focus. Personality and Social Psychology Bulletin, 30(2), 123–133. doi:10.1177/0146167203259936.

    PubMed  Google Scholar 

  61. Eiser, C., Eiser, J. R., & Stride, C. B. (2005). Quality of life in children newly diagnosed with cancer and their mothers. Health and Quality of Life Outcomes, 3, 29. doi:10.1186/1477-7525-3-29.

    PubMed Central  PubMed  Google Scholar 

  62. Eiser, C., Greco, V., Vance, Y. H., Horne, B., & Glaser, A. (2004). Perceived discrepancies and their resolution: Quality of life in survivors of childhood cancer. Psychology and Health, 19, 15–28.

    Google Scholar 

  63. Eiser, C., Vance, Y. H., Glaser, A., Galvin, H., Horne, B., Picton, S., et al. (2005). Growth hormone treatment and quality of life among survivors of childhood cancer. Hormone Research, 63(6), 300–304. doi:10.1159/000087066.

    CAS  PubMed  Google Scholar 

  64. Eiser, C., Vance, Y. H., Horne, B., Glaser, A., & Galvin, H. (2003). The value of the PedsQLTM in assessing quality of life in survivors of childhood cancer. Child: Care, Health and Development, 29(2), 95–102.

    Google Scholar 

  65. Engelen, V., Koopman, H. M., Detmar, S. B., Raat, H., van de Wetering, M. D., Brons, P., et al. (2011). Health-related quality of life after completion of successful treatment for childhood cancer. Pediatric Blood and Cancer, 56(4), 646–653. doi:10.1002/pbc.22795.

    CAS  PubMed  Google Scholar 

  66. Erickson, J. M., Beck, S. L., Christian, B. R., Dudley, W., Hollen, P. J., Albritton, K. A., et al. (2011). Fatigue, sleep-wake disturbances, and quality of life in adolescents receiving chemotherapy. Journal of Pediatric Hematology/oncology, 33(1), e17–e25. doi:10.1097/MPH.0b013e3181f46a46.

    PubMed  Google Scholar 

  67. Feeny, D., Furlong, W., Barr, R. D., Torrance, G. W., Rosenbaum, P., & Weitzman, S. (1992). A comprehensive multi attribute system for classifying the health status of survivors of childhood cancer. Journal of Clinical Oncology, 10(6), 923–928.

    CAS  PubMed  Google Scholar 

  68. Feeny, D., Leiper, A., Barr, R. D., Furlong, W., Torrance, G. W., Rosenbaum, P., et al. (1993). The comprehensive assessment of health status in survivors of childhood cancer: Application to high-risk acute lymphoblastic leukaemia. British Journal of Cancer, 67(5), 1047–1052.

    CAS  PubMed Central  PubMed  Google Scholar 

  69. Felder-Puig, R., Frey, E., Proksch, K., Varni, J. W., Gadner, H., & Topf, R. (2004). Validation of the German version of the Pediatric Quality of Life Inventory (PedsQL) in childhood cancer patients off treatment and children with epilepsy. Quality of Life Research, 13(1), 223–234.

    CAS  PubMed  Google Scholar 

  70. Fu, L., Talsma, D., Baez, F., Bonilla, M., Moreno, B., Ah-Chu, M., et al. (2006). Measurement of health-related quality of life in survivors of cancer in childhood in Central America: Feasibility, reliability, and validity. Journal of Pediatric Hematology/oncology, 28(6), 331–341. doi:00043426-200606000-00003.

    Google Scholar 

  71. Gerber, N. U., Zehnder, D., Zuzak, T. J., Poretti, A., Boltshauser, E., & Grotzer, M. A. (2008). Outcome in children with brain tumours diagnosed in the first year of life: Long-term complications and quality of life. Archives of Disease in Childhood, 93(7), 582–589. doi:10.1136/adc.2007.116202.

    CAS  PubMed  Google Scholar 

  72. Glaser, A. W., Abdul Rashid, N. F., CL, U., & Walker, D. A. (1997). School behaviour and health status after central nervous system tumours in childhood. British Journal of Cancer, 76(5), 643–650.

    CAS  PubMed Central  PubMed  Google Scholar 

  73. Glaser, A. W., Davies, K., Walker, D., & Brazier, D. (1997). Influence of proxy respondents and mode of administration on health status assessment following central nervous system tumours in childhood. Quality of Life Research, 6(1), 43–53.

    CAS  PubMed  Google Scholar 

  74. Gohar, S. F., Comito, M., Price, J., & Marchese, V. (2011). Feasibility and parent satisfaction of a physical therapy intervention program for children with acute lymphoblastic leukemia in the first 6 months of medical treatment. Pediatric Blood and Cancer, 56(5), 799–804. doi:10.1002/pbc.22713.

    PubMed  Google Scholar 

  75. Goodwin, D. A. J., Boggs, S. R., & Graham-Pole, J. (1994). Development and validation of the Pediatric Oncology Quality of Life Scale. Psychological Assessment, 6(4), 321–328.

    Google Scholar 

  76. Grant, J., Cranston, A., Horsman, J., Furlong, W., Barr, N., Findlay, S., et al. (2006). Health status and health-related quality of life in adolescent survivors of cancer in childhood. Journal of Adolescent Health, 38(5), 504–510. doi:10.1016/j.jadohealth.2005.08.002.

    PubMed  Google Scholar 

  77. Grootenhuis, M. A., Koopman, H. M., Verrips, E. G., Vogels, A. G., & Last, B. F. (2007). Health-related quality of life problems of children aged 8–11 years with a chronic disease. Developmental Neurorehabilitation, 10(1), 27–33.

    CAS  PubMed  Google Scholar 

  78. Gurney, J. G., Tersak, J. M., Ness, K. K., Landier, W., Matthay, K. K., & Schmidt, M. L. (2007). Hearing loss, quality of life, and academic problems in long-term neuroblastoma survivors: A report from the Children’s Oncology Group. Pediatrics, 120(5), e1229–e1236. doi:10.1542/peds.2007-0178.

    PubMed  Google Scholar 

  79. Hamidah, A., Wong, C. Y., Tamil, A. M., Zarina, L. A., Zulkifli, Z. S., & Jamal, R. (2011). Health-related quality of life (HRQOL) among pediatric leukemia patients in Malaysia. Pediatric Blood and Cancer, 57(1), 105–109. doi:10.1002/pbc.23125.

    PubMed  Google Scholar 

  80. Hao, Y., Tian, Q., Lu, Y., Chai, Y., & Rao, S. (2010). Psychometric properties of the Chinese version of the Pediatric Quality of Life Inventory 4.0 generic core scales. Quality of Life Research, 19(8), 1229–1233. doi:10.1007/s11136-010-9672-y.

    PubMed  Google Scholar 

  81. Hinds, P. S., Billups, C. A., Cao, X., Gattuso, J. S., Burghen, E., West, N., et al. (2009). Health-related quality of life in adolescents at the time of diagnosis with osteosarcoma or acute myeloid leukemia. European Journal of Oncology Nursing, 13(3), 156–163. doi:10.1016/j.ejon.2008.08.003.

    PubMed  Google Scholar 

  82. Hinds, P. S., Burghen, E. A., Zhou, Y., Zhang, L., West, N., Bashore, L., et al. (2007). The Health Utilities Index 3 invalidated when completed by nurses for pediatric oncology patients. Cancer Nursing, 30(3), 169–177. doi:10.1097/01.NCC.0000270700.11425.4d.

    PubMed  Google Scholar 

  83. Hinds, P. S., Gattuso, J. S., Billups, C. A., West, N. K., Wu, J., Rivera, C., et al. (2009). Aggressive treatment of non-metastatic osteosarcoma improves health-related quality of life in children and adolescents. European Journal of Cancer, 45(11), 2007–2014. doi:10.1016/j.ejca.2009.04.020.

    PubMed Central  PubMed  Google Scholar 

  84. Hinds, P. S., Hockenberry, M., Feusner, J., Hord, J. D., Rackoff, W., & Rozzouk, B. I. (2005). Hemoglobin response and improvements in quality of life in anemic children with cancer receiving myelosuppressive chemotherapy. Journal of Supportive Oncology, 3(6 Suppl 4), 10–11.

    PubMed  Google Scholar 

  85. Hullmann, S. E., Wolfe-Christensen, C., Meyer, W. H., McNall-Knapp, R. Y., & Mullins, L. L. (2010). The relationship between parental overprotection and health-related quality of life in pediatric cancer: The mediating role of perceived child vulnerability. Quality of Life Research, 19(9), 1373–1380. doi:10.1007/s11136-010-9696-3.

    PubMed  Google Scholar 

  86. Hutchings, H. A., Upton, P., Cheung, W. Y., Maddocks, A., Eiser, C., Williams, J. G., et al. (2007). Adaptation of the Manchester-Minneapolis Quality of Life instrument for use in the UK population. Archives of Disease in Childhood, 92(10), 855–860. doi:10.1136/adc.2006.098947.

    CAS  PubMed Central  PubMed  Google Scholar 

  87. Hutchings, H. A., Upton, P., Cheung, W. Y., Maddocks, A., Eiser, C., Williams, J. G., et al. (2008). Development of a parent version of the Manchester–Minneapolis quality of life survey for use by parents and carers of UK children: MMQL-UK (PF). Health and Quality of Life Outcomes, 6, 19. doi:10.1186/1477-7525-6-191477-7525-6-19.

    PubMed Central  PubMed  Google Scholar 

  88. Janse, A. J., Sinnema, G., Uiterwaal, C. S., Kimpen, J. L., & Gemke, R. J. (2005). Quality of life in chronic illness: Perceptions of parents and paediatricians. Archives of Disease in Childhood, 90(5), 486–491. doi:10.1136/adc.2004.051722.

    CAS  PubMed Central  PubMed  Google Scholar 

  89. Jurbergs, N., Russell, K. M., Long, A., & Phipps, S. (2008). Adaptive style and differences in parent and child report of health-related quality of life in children with cancer. Psychooncology, 17(1), 83–90. doi:10.1002/pon.1195.

    PubMed  Google Scholar 

  90. Kazak, A. E., & Barakat, L. P. (1997). Brief report: Parenting stress and quality of life during treatment for childhood leukemia predicts child and parent adjustment after treatment ends. Journal of Pediatric Psychology, 22(5), 749–758.

    CAS  PubMed  Google Scholar 

  91. Kennedy, C. R., & Leyland, K. (1999). Comparison of screening instruments for disability and emotional/behavioral disorders with a generic measure of health-related quality of life in survivors of childhood brain tumors. International Journal of Cancer Supplement, 12, 106–111. doi:10.1002/(SICI)1097-0215(1999)83:12+<106:AID-IJC19>3.0.CO;2-T.

    CAS  Google Scholar 

  92. Klaassen, R. J., Krahn, M., Gaboury, I., Hughes, J., Anderson, R., Grundy, P., et al. (2010). Evaluating the ability to detect change of health-related quality of life in children with Hodgkin disease. Cancer, 116(6), 1608–1614. doi:10.1002/cncr.24883.

    PubMed  Google Scholar 

  93. Koopman, H. M., Koetsier, J. A., Taminiau, A. H., Hijnen, K. E., Bresters, D., & Egeler, R. M. (2005). Health-related quality of life and coping strategies of children after treatment of a malignant bone tumor: A 5-year follow-up study. Pediatric Blood and Cancer, 45(5), 694–699. doi:10.1002/pbc.20408.

    PubMed  Google Scholar 

  94. Lai, J. S., Cella, D., Peterman, A., Barocas, J., & Goldman, S. (2005). Anorexia/cachexia-related quality of life for children with cancer. Cancer, 104(7), 1531–1539. doi:10.1002/cncr.21315.

    PubMed  Google Scholar 

  95. Lai, J. S., Cella, D., Tomita, T., Bode, R. K., Newmark, M., & Goldman, S. (2007). Developing a health-related quality of life instrument for childhood brain tumor survivors. Childs Nervous System, 23(1), 47–57. doi:10.1007/s00381-006-0176-6.

    Google Scholar 

  96. Landolt, M. A., Vollrath, M., Niggli, F. K., Gnehm, H. E., & Sennhauser, F. H. (2006). Health-related quality of life in children with newly diagnosed cancer: A one year follow-up study. Health and Quality of Life Outcomes, 4, 63. doi:10.1186/1477-7525-4-63.

    PubMed Central  PubMed  Google Scholar 

  97. Lau, J. T., Yu, X. N., Chu, Y., Shing, M. M., Wong, E. M., Leung, T. F., et al. (2010). Validation of the Chinese version of the Pediatric Quality of Life Inventory (PedsQL) Cancer Module. Journal of Pediatric Psychology, 35(1), 99–109. doi:10.1093/jpepsy/jsp035jsp035.

    PubMed  Google Scholar 

  98. Le Gales, C., Costet, N., Gentet, J. C., Kalifa, C., Frappaz, D., Edan, C., et al. (1999). Cross-cultural adaptation of a health status classification system in children with cancer. First results of the French adaptation of the Health Utilities Index Marks 2 and 3. International Journal of Cancer Supplement, 12, 112–118. doi:10.1002/(SICI)1097-0215(1999)83:12+<112:AID-IJC20>3.0.CO;2-J.

    Google Scholar 

  99. Levi, R. B., & Drotar, D. (1999). Health-related quality of life in childhood cancer: Discrepancy in parent-child reports. International Journal of Cancer Supplement, 12, 58–64. doi:10.1002/(SICI)1097-0215(1999)83:12+<58:AID-IJC11>3.0.CO;2-A.

    CAS  Google Scholar 

  100. Matziou, V., Perdikaris, P., Feloni, D., Moschovi, M., Tsoumakas, K., & Merkouris, A. (2008). Cancer in childhood: Children’s and parents’ aspects for quality of life. European Journal of Oncology Nursing, 12(3), 209–216. doi:10.1016/j.ejon.2007.10.005.

    PubMed  Google Scholar 

  101. Maurice-Stam, H., Oort, F. J., Last, B. F., Brons, P. P., Caron, H. N., & Grootenhuis, M. A. (2009). School-aged children after the end of successful treatment of non-central nervous system cancer: Longitudinal assessment of health-related quality of life, anxiety and coping. European Journal of Cancer Care, 18(4), 401–410. doi:10.1111/j.1365-2354.2008.01041.x.

    CAS  PubMed  Google Scholar 

  102. 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. doi:10.1002/cncr.20609.

    PubMed  Google Scholar 

  103. 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 and Development, 36(1), 123–129. doi:10.1111/j.1365-2214.2009.01034.x.

    CAS  Google Scholar 

  104. Mounir, G. M., & Abolfotouh, M. A. (2007). Assessment of health related quality of life among school children with cancer in Alexandria. Journal of the Egyptian Public Health Association, 82(3–4), 219–238.

    PubMed  Google Scholar 

  105. Mulhern, R. K. (1999). Correlation of the Health Utilities Index Mark 2 cognition scale and neuropsychological functioning among survivors of childhood medulloblastoma. International Journal of Cancer Supplement, 12, 91–94. doi:10.1002/(SICI)1097-0215(1999)83:12+<91:AID-IJC17>3.0.CO;2-O.

    CAS  Google Scholar 

  106. Norris, J. M., Moules, N. J., Pelletier, G., & Culos-Reed, S. N. (2010). Families of young pediatric cancer survivors: A cross-sectional survey examining physical activity behavior and health-related quality of life. Journal of Pediatric Oncology Nursing, 27(4), 196–208. doi:10.1177/10434542093584111043454209358411.

    PubMed  Google Scholar 

  107. 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 and Cancer, 49(3), 287–293. doi:10.1002/pbc.21026.

    PubMed  Google Scholar 

  108. Pek, J. H., Chan, Y. H., Yeoh, A. E., Quah, T. C., Tan, P. L., & Aung, L. (2010). Health-related quality of life in children with cancer undergoing treatment: A first look at the Singapore experience. Annals of the Academy of Medicine, Singapore, 39(1), 43–48.

    PubMed  Google Scholar 

  109. Penn, A., Lowis, S. P., Hunt, L. P., Shortman, R. I., Stevens, M. C., McCarter, R. L., et al. (2008). Health related quality of life in the first year after diagnosis in children with brain tumours compared with matched healthy controls; a prospective longitudinal study. European Journal of Cancer, 44(9), 1243–1252. doi:10.1016/j.ejca.2007.09.015.

    PubMed  Google Scholar 

  110. Penn, A., Shortman, R. I., Lowis, S. P., Stevens, M. C., Hunt, L. P., McCarter, R. J., et al. (2010). Child-related determinants of health-related quality of life in children with brain tumours 1 year after diagnosis. Pediatric Blood and Cancer, 55(7), 1377–1385. doi:10.1002/pbc.22743.

    PubMed  Google Scholar 

  111. Phipps, S., Long, A. M., & Ogden, J. (2007). Benefit Finding Scale for Children: Preliminary findings from a childhood cancer population. Journal of Pediatric Psychology, 32(10), 1264–1271. doi:10.1093/jpepsy/jsl052.

    PubMed  Google Scholar 

  112. 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. doi:10.1007/s11136-009-9580-1.

    PubMed  Google Scholar 

  113. Ramchandren, S., Leonard, M., Mody, R. J., Donohue, J. E., Moyer, J., Hutchinson, R., et al. (2009). Peripheral neuropathy in survivors of childhood acute lymphoblastic leukemia. Journal of the Peripheral Nervous System, 14(3), 184–189. doi:10.1111/j.1529-8027.2009.00230.x.

    PubMed  Google Scholar 

  114. Reinfjell, T., Lofstad, G. E., Veenstra, M., Vikan, A., & Diseth, T. H. (2007). Health-related quality of life and intellectual functioning in children in remission from acute lymphoblastic leukaemia. Acta Paediatrica, 96(9), 1280–1285. doi:10.1111/j.1651-2227.2007.00383.x.

    PubMed  Google Scholar 

  115. Roddenberry, A., & Renk, K. (2008). Quality of life in pediatric cancer patients: The relationships among parents’ characteristics, children’s characteristics, and informant concordance. Journal of Child and Family Studies, 17, 402–426.

    Google Scholar 

  116. Roizen, M., Rodriguez, S., Bauer, G., Medin, G., Bevilacqua, S., Varni, J. W., et al. (2008). Initial validation of the Argentinean Spanish version of the PedsQL 4.0 Generic Core Scales in children and adolescents with chronic diseases: Acceptability and comprehensibility in low-income settings. Health and Quality of Life Outcomes, 6, 59. doi:10.1186/1477-7525-6-591477-7525-6-59.

    PubMed Central  PubMed  Google Scholar 

  117. Russell, K. M., Hudson, M., Long, A., & Phipps, S. (2006). Assessment of health-related quality of life in children with cancer: Consistency and agreement between parent and child reports. Cancer, 106(10), 2267–2274. doi:10.1002/cncr.21871.

    PubMed  Google Scholar 

  118. San Juan, A. F., Chamorro-Vina, C., Mate-Munoz, J. L., Fernandez del Valle, M., Cardona, C., Hernandez, M., et al. (2008). Functional capacity of children with leukemia. International Journal of Sports Medicine, 29(2), 163–167. doi:10.1055/s-2007-964908.

    CAS  PubMed  Google Scholar 

  119. Sands, S. A., Kellie, S. J., Davidow, A. L., Diez, B., Villablanca, J., Weiner, H. L., et al. (2001). Long-term quality of life and neuropsychologic functioning for patients with CNS germ-cell tumors: From the First International CNS Germ-Cell Tumor Study. Neuro Oncology, 3(3), 174–183.

    CAS  PubMed Central  PubMed  Google Scholar 

  120. Sands, S. A., Milner, J. S., Goldberg, J., Mukhi, V., Moliterno, J. A., Maxfield, C., et al. (2005). Quality of life and behavioral follow-up study of pediatric survivors of craniopharyngioma. Journal of Neurosurgery, 103(4 Suppl), 302–311. doi:10.3171/ped.2005.103.4.0302.

    PubMed  Google Scholar 

  121. Sands, S. A., Pasichow, K. P., Weiss, R., Garvin, J., Gardner, S., Dunkel, I. J., et al. (2011). Quality of life and behavioral follow-up study of Head Start I pediatric brain tumor survivors. Journal of Neuro-oncology, 101(2), 287–295. doi:10.1007/s11060-010-0260-3.

    PubMed  Google Scholar 

  122. 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, 38. doi:10.1186/1477-7525-8-381477-7525-8-38.

    PubMed Central  PubMed  Google Scholar 

  123. Sawyer, M., Antoniou, G., Toogood, I., & Rice, M. (1999). A comparison of parent and adolescent reports describing the health-related quality of life of adolescents treated for cancer. International Journal of Cancer Supplement, 12, 39–45. doi:10.1002/(SICI)1097-0215(1999)83:12+<39:AID-IJC8>3.0.CO;2-7.

    CAS  Google Scholar 

  124. Scarpelli, A. C., Paiva, S. M., Pordeus, I. A., Ramos-Jorge, M. L., Varni, J. W., & Allison, P. J. (2008). Measurement properties of the Brazilian version of the Pediatric Quality of Life Inventory (PedsQL) cancer module scale. Health and Quality of Life Outcomes, 6, 7. doi:10.1186/1477-7525-6-71477-7525-6-7.

    PubMed Central  PubMed  Google Scholar 

  125. Seid, M., Varni, J. W., Rode, C. A., & Katz, E. R. (1999). The Pediatric Cancer Quality of Life Inventory: A modular approach to measuring health-related quality of life in children with cancer. International Journal of Cancer Supplement, 12, 71–76. doi:10.1002/(SICI)1097-0215(1999)83:12+<71:AID-IJC13>3.0.CO;2-5.

    CAS  Google Scholar 

  126. Shankar, S., Robison, L., Jenney, M. E., Rockwood, T. H., Wu, E., Feusner, J., et al. (2005). Health-related quality of life in young survivors of childhood cancer using the Minneapolis-Manchester Quality of Life-Youth Form. Pediatrics, 115(2), 435–442. doi:10.1542/peds.2004-0649.

    PubMed  Google Scholar 

  127. Sheppard, L., Eiser, C., & Kingston, J. (2005). Mothers’ perceptions of children’s quality of life following early diagnosis and treatment for retinoblastoma (Rb). Child: Care, Health and Development, 31(2), 137–142. doi:10.1111/j.1365-2214.2005.00498.x.

    Google Scholar 

  128. Sitaresmi, M. N., Mostert, S., Gundy, C. M., Sutaryo, & Veerman, A. J. (2008). Health-related quality of life assessment in Indonesian childhood acute lymphoblastic leukemia. Health and Quality of Life Outcomes, 6, 96. doi:10.1186/1477-7525-6-961477-7525-6-96.

    PubMed Central  PubMed  Google Scholar 

  129. Speechley, K. N., Barrera, M., Shaw, A. K., Morrison, H. I., & Maunsell, E. (2006). Health-related quality of life among child and adolescent survivors of childhood cancer. Journal of Clinical Oncology, 24(16), 2536–2543. doi:10.1200/JCO.2005.03.9628.

    PubMed  Google Scholar 

  130. Speyer, E., Herbinet, A., Vuillemin, A., Chastagner, P., & Briancon, S. (2009). Agreement between children with cancer and their parents in reporting the child’s health-related quality of life during a stay at the hospital and at home. Child: Care, Health and Development, 35(4), 489–495. doi:10.1111/j.1365-2214.2009.00972.x.

    CAS  Google Scholar 

  131. Speyer, E., Vuillemin, A., Herbinet, A., Chastagner, P., & Briancon, S. (2010). Effect of adapted physical activity on health-related quality of life among hospitalized children and adolescents (the ACTIV’HOP randomized controlled trial): Design and methods. Contemporary Clinical Trials, 31(2), 165–171. doi:10.1016/j.cct.2009.12.003.

    PubMed  Google Scholar 

  132. Stevens, B., Croxford, R., McKeever, P., Yamada, J., Booth, M., Daub, S., et al. (2006). Hospital and home chemotherapy for children with leukemia: A randomized cross-over study. Pediatric Blood and Cancer, 47(3), 285–292. doi:10.1002/pbc.20598.

    PubMed  Google Scholar 

  133. Sung, L., Greenberg, M. L., Doyle, J. J., Young, N. L., Ingber, S., Rubenstein, J., et al. (2003). Construct validation of the Health Utilities Index and the Child Health Questionnaire in children undergoing cancer chemotherapy. British Journal of Cancer, 88(8), 1185–1190. doi:10.1038/sj.bjc.66008956600895.

    CAS  PubMed Central  PubMed  Google Scholar 

  134. Sung, L., Klaassen, R. J., Dix, D., Pritchard, S., Yanofsky, R., Dzolganovski, B., et al. (2009). Identification of paediatric cancer patients with poor quality of life. British Journal of Cancer, 100(1), 82–88. doi:10.1038/sj.bjc.66048266604826.

    CAS  PubMed Central  PubMed  Google Scholar 

  135. Sung, L., Yanofsky, R., Klaassen, R. J., Dix, D., Pritchard, S., Winick, N., et al. (2011). Quality of life during active treatment for pediatric acute lymphoblastic leukemia. International Journal of Cancer, 128(5), 1213–1220. doi:10.1002/ijc.25433.

    CAS  Google Scholar 

  136. Tabone, M. D., Rodary, C., Oberlin, O., Gentet, J. C., Pacquement, H., & Kalifa, C. (2005). Quality of life of patients treated during childhood for a bone tumor: Assessment by the Child Health Questionnaire. Pediatric Blood and Cancer, 45(2), 207–211. doi:10.1002/pbc.20297.

    PubMed  Google Scholar 

  137. Tomlinson, D., Hinds, P. S., Bartels, U., Hendershot, E., & Sung, L. (2011). Parent reports of quality of life for pediatric patients with cancer with no realistic chance of cure. Journal of Clinical Oncology, 29(6), 639–645. doi:10.1200/JCO.2010.31.4047JCO.2010.31.4047.

    PubMed  Google Scholar 

  138. Trudel, J. G., Rivard, M., Dobkin, P. L., Leclerc, J. M., & Robaey, P. (1998). Psychometric properties of the Health Utilities Index Mark 2 system in paediatric oncology patients. Quality of Life Research, 7(5), 421–432.

    CAS  PubMed  Google Scholar 

  139. Upton, P., Eiser, C., Cheung, I., Hutchings, H. A., Jenney, M., Maddocks, A., et al. (2005). Measurement properties of the UK-English version of the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales. Health and Quality of Life Outcomes, 3, 22. doi:10.1186/1477-7525-3-22.

    PubMed Central  PubMed  Google Scholar 

  140. Varni, J. W., Burwinkle, T. M., & Katz, E. R. (2004). The PedsQL in pediatric cancer pain: A prospective longitudinal analysis of pain and emotional distress. Journal of Developmental and Behavioral Pediatrics, 25(4), 239–246. doi:00004703-200408000-00003.

    Google Scholar 

  141. 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. doi:10.1002/cncr.10428.

    PubMed  Google Scholar 

  142. Varni, J. W., Katz, E. R., Seid, M., Quiggins, D. J., & Friedman-Bender, A. (1998). The pediatric cancer quality of life inventory-32 (PCQL-32): I. Reliability and validity. Cancer, 82(6), 1184–1196. doi:10.1002/(SICI)1097-0142(19980315)82:6<1184:AID-CNCR25>3.0.CO;2-1.

    CAS  PubMed  Google Scholar 

  143. Varni, J. W., Katz, E. R., Seid, M., Quiggins, D. J., Friedman-Bender, A., & Castro, C. M. (1998). The Pediatric Cancer Quality of Life Inventory (PCQL). I. Instrument development, descriptive statistics, and cross-informant variance. Journal of Behavioral Medicine, 21(2), 179–204.

    CAS  PubMed  Google Scholar 

  144. Varni, J. W., Limbers, C. A., Bryant, W. P., & Wilson, D. P. (2010). The PedsQL multidimensional fatigue scale in pediatric obesity: Feasibility, reliability and validity. International Journal of Pediatric Obesity, 5(1), 34–42. doi:10.3109/17477160903111706913079224.

    PubMed  Google Scholar 

  145. Varni, J. W., Limbers, C. A., & Burwinkle, T. M. (2007). Impaired health-related quality of life in children and adolescents with chronic conditions: A comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales. Health and Quality of Life Outcomes, 5, 43. doi:10.1186/1477-7525-5-43.

    PubMed Central  PubMed  Google Scholar 

  146. Varni, J. W., Seid, M., & Rode, C. A. (1999). The PedsQL: Measurement model for the pediatric quality of life inventory. Medical Care, 37(2), 126–139.

    CAS  PubMed  Google Scholar 

  147. Ward-Smith, P., Hamlin, J., Bartholomew, J., & Stegenga, K. (2007). Quality of life among adolescents with cancer. Journal of Pediatric Oncology Nursing, 24(3), 166–171. doi:10.1177/1043454207299656.

    PubMed  Google Scholar 

  148. Waters, E. B., Wake, M. A., Hesketh, K. D., Ashley, D. M., & Smibert, E. (2003). Health-related quality of life of children with acute lymphoblastic leukaemia: Comparisons and correlations between parent and clinician reports. International Journal of Cancer, 103(4), 514–518. doi:10.1002/ijc.10815.

    CAS  Google Scholar 

  149. Watson, M., Edwards, L., Von Essen, L., Davidson, J., Day, R., & Pinkerton, R. (1999). Development of the Royal Marsden Hospital paediatric oncology quality of life questionnaire. International Journal of Cancer Supplement, 12, 65–70. doi:10.1002/(SICI)1097-0215(1999)83:12+<65:AID-IJC12>3.0.CO;2-7.

    CAS  Google Scholar 

  150. Weintraub, N., Rot, I., Shoshani, N., Pe’er, J., & Weintraub, M. (2011). Participation in daily activities and quality of life in survivors of retinoblastoma. Pediatric Blood and Cancer, 56(4), 590–594. doi:10.1002/pbc.22790.

    PubMed  Google Scholar 

  151. Williams, N. A., Davis, G., Hancock, M., & Phipps, S. (2010). Optimism and pessimism in children with cancer and healthy children: Confirmatory factor analysis of the youth life orientation test and relations with health-related quality of life. Journal of Pediatric Psychology, 35(6), 672–682. doi:10.1093/jpepsy/jsp084jsp084.

    PubMed Central  PubMed  Google Scholar 

  152. Wilson, K., Mazhar, W., Rojas-Cooley, T., De Rosa, V., & Van Cleve, L. (2011). A glimpse into the lives of 3 children: Their cancer journey. Journal of Pediatric Oncology Nursing, 28(2), 100–106. doi:10.1177/10434542103778991043454210377899.

    PubMed  Google Scholar 

  153. Wright, M. J., Galea, V., & Barr, R. D. (2003). Self-perceptions of physical activity in survivors of acute lymphoblastic leukemia in childhood. Pediatric Exercise Science, 15(2), 191–201.

    Google Scholar 

  154. Wright, M. J., Galea, V., & Barr, R. D. (2005). Proficiency of balance in children and youth who have had acute lymphoblastic leukemia. Physical Therapy, 85(8), 782–790.

    PubMed  Google Scholar 

  155. Wu, E., Robison, L. L., Jenney, M. E., Rockwood, T. H., Feusner, J., Friedman, D., et al. (2007). Assessment of health-related quality of life of adolescent cancer patients using the Minneapolis–Manchester Quality of Life Adolescent Questionnaire. Pediatric Blood and Cancer, 48(7), 678–686. doi:10.1002/pbc.20874.

    PubMed  Google Scholar 

  156. Yaris, N., Yavuz, M. N., Yavuz, A. A., & Okten, A. (2001). Assessment of quality of life in pediatric cancer patients at diagnosis and during therapy. Turkish Journal of Cancer, 31, 139–149.

    Google Scholar 

  157. Yeh, C. H. (2002). Health-related quality of life in pediatric patients with cancer. A structural equation approach with the Roy Adaptation Model. Cancer Nursing, 25(1), 74–80.

    PubMed  Google Scholar 

  158. Yeh, C. H., Chang, C. W., & Chang, P. C. (2005). Evaluating quality of life in children with cancer using children’s self-reports and parent-proxy reports. Nursing Research, 54(5), 354–362. doi:00006199-200509000-00010.

    Google Scholar 

  159. Yeh, C. H., Chao, K. Y., & Hung, L. C. (2004). The quality of life for cancer children (QOLCC) in Taiwan (part 1): Reliability and construct validity by confirmatory factor analysis. Psychooncology, 13(3), 161–170. doi:10.1002/pon.729.

    Google Scholar 

  160. Yeh, C. H., & Hung, L. C. (2003). Construct validity of newly developed quality of life assessment instrument for child and adolescent cancer patients in Taiwan. Psychooncology, 12(4), 345–356. doi:10.1002/pon.647.

    PubMed  Google Scholar 

  161. Yeh, C. H., Hung, L. C., & Chao, K. Y. (2004). The quality of life for cancer children (QOLCC) for Taiwanese children with cancer (part II): Feasibility, cross-informants variance and clinical validity. Psychooncology, 13(3), 171–176. doi:10.1002/pon.729.

    PubMed  Google Scholar 

  162. Yoo, H., Kim, D. S., Shin, H. Y., Lai, J. S., Cella, D., Park, H. J., et al. (2010). Validation of the Pediatric Functional Assessment of Cancer Therapy Questionnaire (Version 2.0) in brain tumor survivors aged 13 years and older. Journal of Pain and Symptom Management, 40(4), 559–565. doi:10.1016/j.jpainsymman.2010.01.024.

    PubMed  Google Scholar 

  163. Yoo, H. J., Kim, D. S., Lai, J. S., Cella, D., Shin, H. Y., & Ra, Y. S. (2011). Validation of Pediatric Functional Assessment of Cancer Therapy Questionnaire (Version 2.0) in Brain Tumor Survivor Aged 13 Years and Older (Parent Form) (PedsFACT-BrS Parent of Adolescent). Journal of Korean Neurosurgical Society, 49(3), 147–152. doi:10.3340/jkns.2011.49.3.147.

    PubMed Central  PubMed  Google Scholar 

  164. Yoo, H. J., Ra, Y. S., Park, H. J., Lai, J. S., Cella, D., Shin, H. Y., et al. (2010). Agreement between pediatric brain tumor patients and parent proxy reports regarding the Pediatric Functional Assessment of Cancer Therapy-Childhood Brain Tumor Survivors questionnaire, version 2. Cancer, 116(15), 3674–3682. doi:10.1002/cncr.25200.

    PubMed  Google Scholar 

  165. Nixon Speechley, K., Maunsell, E., Desmeules, M., Schanzer, D., Landgraf, J. M., Feeny, D. H., et al. (1999). Mutual concurrent validity of the child health questionnaire and the health utilities index: An exploratory analysis using survivors of childhood cancer. International Journal of Cancer Supplement, 12, 95–105. doi:10.1002/(SICI)1097-0215(1999)83:12+<95:AID-IJC18>3.0.CO;2-H.

    CAS  Google Scholar 

  166. Meeske, K. A., Patel, S. K., Palmer, S. N., Nelson, M. B., & Parow, A. M. (2007). Factors associated with health-related quality of life in pediatric cancer survivors. Pediatric Blood and Cancer, 49(3), 298–305. doi:10.1002/pbc.20923.

    PubMed  Google Scholar 

  167. Maurice-Stam, H., Oort, F. J., Last, B. F., Brons, P. P., Caron, H. N., & Grootenhuis, M. A. (2008). Longitudinal assessment of health-related quality of life in preschool children with non-CNS cancer after the end of successful treatment. Pediatric Blood and Cancer, 50(5), 1047–1051. doi:10.1002/pbc.21374.

    PubMed  Google Scholar 

  168. af Sandeberg, M., Johansson, E., Bjork, O., & Wettergren, L. (2008). Health-related quality of life relates to school attendance in children on treatment for cancer. Journal of Pediatric Oncology Nursing, 25(5), 265–274. doi:10.1177/10434542083211191043454208321119.

    PubMed  Google Scholar 

  169. Maurice-Stam, H., Grootenhuis, M. A., Brons, P. P., Caron, H. N., & Last, B. F. (2007). Psychosocial indicators of health-related quality of life in children with cancer 2 months after end of successful treatment. Journal of Pediatric Hematology/oncology, 29(8), 540–550. doi:10.1097/MPH.0b013e3181256b6600043426-200708000-00006.

    PubMed  Google Scholar 

  170. Marchese, V. G., & Chiarello, L. A. (2004). Relationships between specific measures of body function, activity, and participation in children with acute lymphoblastic leukemia. Rehabilitation Oncology, 22, 5–9.

    Google Scholar 

  171. Van Dijk, J., Huisman, J., Moll, A. C., Shouten-van, M., Bezemer, P. D., Ringens, P. J., et al. (2007). Health-related quality of life of child and adolescent retinoblastoma survivors in the Netherlands. Health and Quality of Life Outcomes, 5, 65.

    PubMed Central  PubMed  Google Scholar 

  172. Ward-Smith, P., McCaskie, B., & Rhoton, S. (2007). Adolescent-evaluated quality of life: A longitudinal study. Journal of Pediatric Oncology Nursing, 24(6), 329–333. doi:10.1177/1043454207308067.

    PubMed  Google Scholar 

  173. Magal-Vardi, O., Laor, N., Toren, A., Strauss, L., Wolmer, L., Bielorai, B., et al. (2004). Psychiatric morbidity and quality of life in children with malignancies and their parents. The Journal of Nervous and Mental Disease, 192(12), 872–875. doi:00005053-200412000-00012.

    Google Scholar 

  174. Mannix, M. M., Feldman, J. M., & Moody, K. (2009). Optimism and health-related quality of life in adolescents with cancer. Child: Care, Health and Development, 35(4), 482–488. doi:10.1111/j.1365-2214.2008.00934.x.

    CAS  Google Scholar 

  175. Stam, H., Grootenhuis, M. A., Brons, P. P., Caron, H. N., & Last, B. F. (2006). Health-related quality of life in children and emotional reactions of parents following completion of cancer treatment. Pediatric Blood and Cancer, 47(3), 312–319. doi:10.1002/pbc.20661.

    PubMed  Google Scholar 

  176. Stern, M., Krivoy, E., Foster, R. H., Bitsko, M., Toren, A., & Ben-Arush, M. (2010). Psychosocial functioning and career decision-making in Israeli adolescent and young adult cancer survivors. Pediatric Blood and Cancer, 55(4), 708–713. doi:10.1002/pbc.22642.

    PubMed  Google Scholar 

  177. Vance, Y. H., Morse, R. C., Jenney, M. E., & Eiser, C. (2001). Issues in measuring quality of life in childhood cancer: Measures, proxies, and parental mental health. Journal of Child Psychology and Psychiatry, 42(5), 661–667.

    CAS  PubMed  Google Scholar 

  178. Boggs, S. R., & Durning, P. (1998). The Pediatric Oncology Quality of Life Scale: Development and validation of a disease-specific quality of life measure. In D. Drotar (Ed.), Measuring health-related quality of life in children and adolescents: Implications for research and practice (pp. 187–202). New Jersey: Lawrence Erlbaum Associates Publishers.

    Google Scholar 

  179. Feeny, D., Furlong, W., Boyle, M., & Torrance, G. W. (1995). Multi-attribute health status classification systems. Health Utilities Index. Pharmacoeconomics, 7(6), 490–502.

    CAS  PubMed  Google Scholar 

  180. Feeny, D. H., Torrence, G., & Furlong, W. (1996). Health utilities index. In B. Spilker (Ed.), Quality of life and pharmacoeconomics in clinical trials (2nd ed.) (pp. 239–252). Philadelphia: Lippincott-Raven.

  181. Fekkes, M., Theunissen, N. C., Brugman, E., Veen, S., Verrips, E. G., Koopman, H. M., et al. (2000). Development and psychometric evaluation of the TAPQOL: A health-related quality of life instrument for 1–5-year-old children. Quality of Life Research, 9(8), 961–972.

    CAS  PubMed  Google Scholar 

  182. Klassen, A. F., Landgraf, J. M., Lee, S. K., Barer, M., Raina, P., Chan, H. W., et al. (2003). Health related quality of life in 3 and 4 year old children and their parents: Preliminary findings about a new questionnaire. Health and Quality of Life Outcomes, 1, 81. doi:10.1186/1477-7525-1-811477-7525-1-81.

    PubMed Central  PubMed  Google Scholar 

  183. Landgraf, J. M., Abetz, L., & Ware, J. E. (2006). The CHQ User’s Manual. Third Printing. Quality Metric Incorporated: Lincoln, RI.

  184. Petersen, C., Schmidt, S., Power, M., & Bullinger, M. (2005). The DISABKIDS Group. Development and pilot-testing of a health-related quality of life chronic generic module for children and adolescents with chronic health conditions: A European perspective. Qualitative Life Research, 14(4), 1065–1077.

    Google Scholar 

  185. Raat, H., Landgraf, J. M., Oostenbrink, R., Moll, H. A., & Essink-Bot, M. L. (2007). Reliability and validity of the Infant and Toddler Quality of Life Questionnaire (ITQOL) in a general population and respiratory disease sample. Quality of Life Research, 16(3), 445–460. doi:10.1007/s11136-006-9134-8.

    PubMed Central  PubMed  Google Scholar 

  186. Ravens-Sieberer, U., & Bullinger, M. (2000). KINDL R Questionnaire for Measuring Health-Related Quality of Life in Children and Adolescents Revised Version Manual. http://kindl.org/cms/impressum. Accessed July 2010.

  187. Ravens-Sieberer, U., Gosch, A., Rajmil, L., Erhart, M., Bruil, J., Duer, W., et al. (2005). KIDSCREEN-52 quality-of-life measure for children and adolescents. Expert Review of Pharmacoeconomics and Outcomes Research, 5(3), 353–364. doi:10.1586/14737167.5.3.353.

    PubMed  Google Scholar 

  188. Rebok, G., Riley, A., Forrest, C., Starfield, B., Green, B., Robertson, J., et al. (2001). Elementary school-aged children’s reports of their health: A cognitive interviewing study. Quality of Life Research, 10(1), 59–70.

    CAS  PubMed  Google Scholar 

  189. Riley, A. W., Forrest, C. B., Rebok, G. W., Starfield, B., Green, B. F., Robertson, J. A., et al. (2004). The child report form of the CHIP-child edition: Reliability and validity. Medical Care, 42(3), 221–231. doi:00005650-200403000-00004.

    Google Scholar 

  190. Riley, A. W., Forrest, C. B., Starfield, B., Rebok, G. W., Robertson, J. A., & Green, B. F. (2004). The parent report form of the CHIP-child edition: Reliability and validity. Medical Care, 42(3), 210–220. doi:00005650-200403000-00003.

    Google Scholar 

  191. Simeoni, M. C., Schmidt, S., Muehlan, H., Debensason, D., & Bullinger, M. (2007). Field testing of a European quality of life instrument for children and adolescents with chronic conditions: The 37-item DISABKIDS Chronic Generic Module. Quality of Life Research, 16(5), 881–893. doi:10.1007/s11136-007-9188-2.

    PubMed  Google Scholar 

  192. Varni, J. W., Seid, M., & Kurtin, P. S. (2001). PedsQL 4.0: Reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Medical Care, 39(8), 800–812.

    CAS  PubMed  Google Scholar 

  193. Vogels, T., Verrips, G. H., Koopman, H., Theunissen, N. C. M., Fekkes, M., & Kamphuis, R. P. (2004). TACQOL manual: Leiden Centre for Child Health and Pediatrics LUMC-TNO. http://worlddatabaseofhappiness.eur.nl/hap_bib/freetexts/vogels_tc_2004.pdf.

  194. Vogels, T., Verrips, G. H., Verloove-Vanhorick, S. P., Fekkes, M., Kamphuis, R. P., Koopman, H. M., et al. (1998). Measuring health-related quality of life in children: The development of the TACQOL parent form. Quality of Life Research, 7(5), 457–465.

    CAS  PubMed  Google Scholar 

  195. World Health Organization. (2011). http://www.who.int/hia/evidence/doh/en/. Accessed January 20, 2011.

  196. Drotar, D. (Ed.). (1998). Measuring health—related quality of life in children and adolescents: Implications for research and practice. Mahwah, NJ: Lawrence Erlbaum Associates, Inc.

    Google Scholar 

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Acknowledgments

This research is supported by the Canadian Cancer Society (Grant Number 20386) and a C17 Research Network Grant. Samantha Anthony is a recipient of a Canadian Institute of Health Research Postdoctoral Fellowship. Anne Klassen and Lillian Sung are recipients of Canadian Institute of Health Research career awards.

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Authors and Affiliations

  1. McMaster University, Hamilton, ON, Canada

    Samantha J. Anthony, Enid Selkirk, Katrin Scheinemann & Anne F. Klassen

  2. The Hospital for Sick Children, Toronto, ON, Canada

    Lillian Sung

  3. Children’s Hospital of Eastern Ontario, Ottawa, ON, Canada

    Robert J. Klaassen

  4. BC Children’s Hospital, Vancouver, BC, Canada

    David Dix

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Anthony, S.J., Selkirk, E., Sung, L. et al. Considering quality of life for children with cancer: a systematic review of patient-reported outcome measures and the development of a conceptual model. Qual Life Res 23, 771–789 (2014). https://doi.org/10.1007/s11136-013-0482-x

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