Literature review: Health-related quality of life measurement in pediatric oncology: Hearing the voices of the children

Journal of Pediatric Psychology

Volumn 32, Issue 9, 2007, Pages 1151-1163

  Varni, James W ^a,b   Limbers, Christine ^b   Burwinkle, Tasha M ^c  

^a TEXAS A M COLLEGE OF MEDICINE   (United States)

^b TEXAS A AND M UNIVERSITY   (United States)

^c TEXAS A AND M HEALTH SCIENCE CENTER   (United States)

Author keywords

Children; Health related quality of life; Patient reported outcomes; Pediatric oncology; PedsQL

Indexed keywords

AGE DISTRIBUTION; CANCER PATIENT; CHILD; CHILDHOOD CANCER; HUMAN; MEDICAL LITERATURE; PARENTAL ATTITUDE; PATIENT ATTITUDE; PUBLICATION; QUALITY OF LIFE; RATING SCALE; RELIABILITY; REVIEW; SELF REPORT; VALIDITY;

ATTITUDE TO HEALTH; CHILD; HEALTH STATUS; HUMANS; NEOPLASMS; QUALITY OF LIFE;

EID: 34548419430     PISSN: 01468693     EISSN: 1465735X     Source Type: Journal    
DOI: 10.1093/jpepsy/jsm008     Document Type: Review

References (70)

1. Achenbach, T. M., McConaughy, S. H., & Howell, C. T. (1987). Child/adolescent behavioral and emotional problems: Implications of cross-informant correlations for situational specificity. Psychological Bulletin, 101, 213-232.
2. Acquadro, C., Berzon, R., Dubois, D., Leidy, N. K., Marquis, P., Revicki, D., et al. (2003). Incorporating the patient's perspective into drug development and communication: An ad hoc task force report of the patient-reported outcomes (PRO) harmonization group meeting at the Food and Drug Administration, February 16, 2001. Value in Health, 6, 522-531.
3. Banthia, R., Malcarne, V. L., Roesch, S. C., Ko, C. M., Greensbergs, H. L., Varni, J. W., et al. (2006). Correspondence between daily and weekly fatigue reports in breast cancer survivors. Journal of Behavioral Medicine, 29, 269-279.
4. Barakat, L. P., Alderfer, M. A., & Kazak, A. E. (2006). Posttraumatic growth in adolescent survivors of cancer and their mothers and fathers. Journal of Pediatric Psychology, 31, 413-419.
5. Barakat, L. P., Hetzke, J. D., Foley, B., Carey, M. E., Gyato, K., & Phillips, P. C. (2003). Evaluation of a social-skills training group intervention with children treated for brain tumors: A pilot study. Journal of Pediatric Psychology, 28, 299-307.
6. Berg-Nielsen, T. S., Vika, A., & Dahl, A. A. (2003). When adolescents disagree with their mothers: CBCL-YSR discrepancies related to maternal depression and adolescent self-esteem. Child: Care, Health and Development, 29, 207-213.
7. Bhat, S. R., Goodwin, T. L., Burwinkle, T. M., Lansdale, M. F., Dahl, G. V., Huhn, S. L., Gibbs, I. C., Donaldson, S. S., Rosenblum, R. K., Varni, J. W., & Fisher, P. G. (2005). Profile of daily life in children with brain tumors: An assessment of health-related quality of life. Journal of Clinical Oncology, 23, 5493-5500.
8. Campo, J. V., Comer, D. M., Jansen-McWilliams, L., Gardner, W., & Kelleher, K. J. (2002). Recurrent pain, emotional distress, and health service use in childhood. Journal of Pediatrics, 141, 76-83.
9. Chang, P., & Yeh, C. (2005). Agreement between child self-report and parent proxy-report to evaluate quality of life in children with cancer. Psycho-Oncology, 14, 125-134.
10. Clancy, C., McGrath, P., & Oddson, B. (2005). Pain in children and adolescents with spina bifida. Developmental Medicine and Child Neurology, 47, 27-34.
11. Clarke, S. A., & Eiser, C. (2004). The measurement of health-related quality of life in pediatric clinical trials: A systematic review. Health and Quality of Life Outcomes, 2, 1-5.
12. Cremeens, J., Eiser, C., & Blades, M. (2006a). Characteristics of health-related self-report measures for children aged three to eight years: A review of the literature. Quality of Life Research, 15, 739-754.
13. Cremeens, J., Eiser, C., & Blades, M. (2006b). Factors influencing agreement between child self-report and parent proxy-reports on the Pediatric Quality of Life Inventory™ 4.0 (PedsQL™) Generic Core Scales. Health and Quality of Life Outcomes, 4, 1-8.
14. Dahlquist, L. M., & Pendley, J. S. (2005). When distraction fails: Parental anxiety and children's responses to distraction during cancer procedures. Journal of Pediatric Psychology, 30, 623-628.
15. 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, 579-590.
16. De Los Reyes, A., & Kazdin, A. E. (2004). Measuring informant discrepancies in clinical child research. Psychological Assessment, 16, 330-334.
17. Drotar, D., Schwartz, L., Palermo, T. M., & Burant, C. (2006). Factor structure of the Child Health Questionnaire-Parent Form in pediatric populations. Journal of Pediatric Psychology, 31, 127-138.
18. Eiser, C. (2004). Use of quality of life measures in clinical trials. Ambulatory Pediatrics, 4, 395-399.
19. Eiser, C., & Morse, R. (2001). Can parents rate their child's health-related quality of life?: Results from a systematic review. Quality of Life Research, 10, 347-357.
20. FDA. (2006). Guidance for Industry: Patient-reported outcome measures: Use in medical product development to support labeling claims. Rockville, MD: Center for Drug Evaluation and Research, Food and Drug Administration.
21. Felder-Puig, R., diGallo, A., Waldenmair, M., Norden, P., Winter, A., Gadner, H., et al. (2006). Health-related quality of life of pediatric patients receiving allogeneic stem cell or bone marrow transplantation: Results of a longitudinal, multi-center study. Bone Marrow Transplantation, 38, 119-126.
22. Feldman, S. I., Downey, G., & Schaffer-Neitz, R. (1999). Pain, negative mood, and perceived support in chronic pain patients: A daily diary study of people with reflex sympathetic dystrophy syndrome. Journal of Consulting and Clinical Psycology, 67, 776-785.
23. Hays, R. M., Valentine, J., Haynes, G., Geyer, J. R., Villareale, N., McKinstry, B., et al. (2006). The Seattle Pediatric Palliative Care Project: Effects on family satisfaction and health-related quality of life. Journal of Palliative Medicine, 9, 716-728.
24. Helton, S. C., Corwyn, R. F., Bonner, M. J., Brown, R. T., & Mulhern, R. K. (2006). Factor analysis and validity of the Conners Parent and Teacher Rating Scales in childhood cancer survivors. Journal of Pediatric Psychology, 31, 200-208.
25. Hinds, R. S., Hockenberry, M., Feusner, J., Hord, J. D., Rackoff, W., & Rozzouk, B. J. (2005). Hemoglobin response and improvements in quality of life in anemic children with cancer receiving myelosuppressive chemotherapy. Journal of Supportive Oncology, 3 (Suppl 4), 10-11.
26. Jaeschke, R., Singer, J., & Guyatt, G. H. (1989). Measurement of health status: Ascertaining the minimal clinically important difference. Controlled Clinical Trials, 10, 407-415.
27. Janicke, D. M., Finney, J. W., & Riley, A. W. (2001). Children's health care use: A prospective investigation of factors related to care-seeking. Medical Care, 39, 990-1001.
28. Johnston, C. A., Steele, R. G., Herrera, E. A., & Phipps, S. (2003). Parent and child reporting of negative life events: Discrepancy and agreement across pediatric samples. Journal of Pediatric Psychology, 28, 579-588.
29. Klosky, J. L., Tyc, V. L., Srivastava, D. K., Tong, X., Kronenberg, M., Booker, Z. J., et al. (2004). Brief report: Evaluation of an interactive intervention designed to reduce pediatric distress during radiation therapy procedures. Journal of Pediatric Psychology, 29, 621-626.
30. Levi, R. B., & Drotar, D. (1999). Health-related quality of life in childhood cancer: Discrepancy in parent-child reports. International Journal of Cancer, 12, 58-64.
31. 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 in Health, 7, 79-92.
32. McGrath, P. A. (1990). Pain in children: Nature, assessment, and treatment. New York: Guilford.
33. Mulhern, R. K., Ochs, J., Armstrong, D., Horowitz, M., Friedman, A., Copeland, D., et al. (1989). Assessment of quality of life among pediatric patients with cancer. Psychological Assessment, 1, 130-138.
34. Nathan, P. C., Furlong, W., & Barr, R. D. (2004). Challenges to the measurement of health-related quality of life in children receiving cancer therapy. Pediatric Blood and Cancer, 43, 215-223.
35. Palmer, S. N., Meeske, K. A., Katz, E. R., Burwinkle, T. M., & Varni, J. W. (in press). The PedsQL™ Brain Tumor Module: Initial reliability and validity. Pediatric Blood and Cancer.
36. Parsons, S. K., Shih, M., DuHamel, K. N., Ostroff, J., Mayer, D. K., Austin, J., et al. (2006). Maternal perspectives on children's health-related quality of life during the first year after pediatric hematopoietic stem cell transplant. Journal of Pediatric Psychology, 31, 1100-1115.
37. Patrick, D. L., & Deyo, R. A. (1989). Generic and disease-specific measures in assessing health status and quality of life. Medical Care, 27, S217-S233.
38. Phipps, S., Larson, S., Long, A., & Rai, S. N. (2006). Adaptive style and symptoms of posttraumatic stress in children with cancer and their parents. Journal of Pediatric Psychology, 31, 298-309.
39. Razzouk, B. I., Hord, J. D., Hockenberry, M., Hinds, P. S., Feusner, J., Williams, D., et al. (2006). Double-blind, placebo-controlled study of quality of life, hematologic end points, and safety of weekly epoetin alfa in children with cancer receiving myelosuppressive chemotherapy. Journal of Clinical Oncology, 24, 3583-3589.
40. Reeves, C. B., Palmer, S. L., Reddick, W. E., Merchant, T. E., Buchanan, G. M., Gajjar, A., et al. (2006). Attention and memory functioning among pediatric patients with medulloblastoma. Journal of Pediatric Psychology, 31, 272-280.
41. Richters, J. E. (1992). Depressed mothers as informants about their children: A critical review of the evidence for distortion. Psychological Bulletin, 112, 485-499.
42. Russell, K. M. W., 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, 2267-2274.
43. Schwartz, L., & Drotar, D. (2006). Posttraumatic stress and related impairment in survivors of childhood cancer in early adulthood compared to healthy peers. Journal of Pediatric Psychology, 31, 356-366.
44. Sherman, S. A., Eisen, S., Burwinkle, T. M., & Varni, J. W. (2006). The PedsQL™ Present Functioning Visual Analogue Scales: Preliminary reliability and validity. Health and Quality of Life Outcomes, 4, 1-10.
45. Sprangers, M. A. G., & Aaronson, N. K. (1992). The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: A review. Journal of Clinical Epidemiology, 45, 743-760.
46. Sprangers, M. A. G., Cull, A., Bjordal, K., Groenvold, M., & Aaronson, N. K. (1993). The European organization for research and treatment of cancer approach to quality of life assessment: Guidelines for developing questionnaire modules. Quality of Life Research, 2, 287-295.
47. Steele, R. G., Dreyer, M. L., & Phipps, S. (2004). Patterns of maternal distress among children with cancer and their association with child emotional and somatic distress. Journal of Pediatric Psychology, 29, 507-517.
48. Stone, A. A., & Shiffman, S. (1994). Ecological momentary assessment (EMA) in behavioral medicine. Annals of Behavioral Medicine, 16, 199-202.
49. Stoppelbein, L. A., Greening, L., & Elkin, T. D. (2006). Risk of posttraumatic stress symptoms: A comparison of child survivors of pediatric cancer and parental bereavement. Journal of Pediatric Psychology, 31, 367-376.
50. Theunissen, N. C. M., Vogels, T. G. C., Koopman, H. M., Verrips, G. H. W., Zwinderman, K. A. H., Verloove-Vanhorick, S. P., et al. (1998). The proxy problem: Child report versus parent report in health-related quality of life research. Quality of Life Research, 7, 387-397.
51. Tyc, V. L., Lensing, S., Klosky, J., Rai, S. N., & Robinson, L. (2005). A comparison of tobacco-related risk factors between adolescents with and without cancer. Journal of Pediatric Psychology, 30, 359-370.
52. 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, 661-667.
53. Varni, J. W., & Bernstein, B. H. (1991). Evaluation and management of pain in children with rheumatic diseases. Rheumatic Disease Clinics of North America, 17, 985-1000.
54. 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, 2090-2106.
55. Varni, J. W., Burwinkle, T. M., & Lane, M. M. (2005). Health-related quality of life measurement in pediatric clinical practice: An appraisal and precept for future research and application. Health and Quality of Life Outcomes, 34, 1-9.
56. Varni, J. W., Burwinkle, T. M., & Seid, M. (2006). The PedsQL™ 4.0 as a school population health measure: Feasibility, reliability, and validity. Quality of Life Research, 15, 203-215.
57. Varni, J. W., Burwinkle, T. M., Seid, M., & Skarr, D. (2003). The PedsQL™ 4.0 as a pediatric population health measure: Feasibility, reliability, and validity. Ambulatory Pediatrics, 3, 329-341.
58. Varni, J. W., Katz, E. R., Colegrove, R., & Dolgin, M. (1995). Adjustment of children with newly diagnosed cancer: Cross-informant variance. Journal of Psychosocial Oncology, 13, 23-38.
59. Varni, J. W., Katz, E. R., Seid, M., Quiggins, D. J. L., 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, 179-204.
60. Varni, J. W., Limbers, C. A., & Burwinkle, T. M. (2007a). How young can children reliably and validly self-report their health-related quality of life?: An analysis of 8,591 children across age subgroups with the PedsQL™ 4.0 Generic Core Scales. Health and Quality of Life Outcomes, 5, 1-13.
61. Varni, J. W., Limbers, C. A., & Burwinkle, T. M. (2007b). Parent proxy-report of their children's health-related quality of life: An analysis of 13,878 parents' reliability and validity across age subgroups using the PedsQL™ 4.0 Generic Core Scales. Health and Quality of Life Outcomes, 5, 1-10.
62. 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, 800-812.
63. Varni, J. W., Seid, M., & Rode, C. A. (1999). The PedsQL™: Measurement model for the Pediatric Quality of Life Inventory. Medical Care, 37, 126-139.
64. Varni, J. W., & Setoguchi, Y. (1992). Screening for behavioral and emotional problems in children and adolescents with congenital or acquired limb deficiencies. American Journal of Diseases of Children, 146, 103-107.
65. Varni, J. W., Thompson, K. L., & Hanson, V. (1987). The Varni/Thompson Pediatric Pain Questionnaire: I. Chronic musculoskeletal pain in juvenile rheumatoid arthritis. Pain, 28, 27-38.
66. Willke, R. J., Burke, L. B., & Erickson, P. (2004). Measuring treatment impact: A review of patient-reported outcomes and other efficacy endpoints in approved product labels. Controlled Clinical Trials, 25, 535-552.
67. World Health Organization. (1948). Constitution of the World Health Organization: Basic document. Geneva, Switzerland: World Health Organization.
68. Wyrwich, K., Tierney, W., & Wolinsky, F. (1999). Further evidence supporting an SEM-based criterion for identifying meaningful intra-individual changes in health-related quality of life. Journal of Clinical Epidemiology, 52, 861-873.
69. Wyrwich, K., Tierney, W., & Wolinsky, F. (2002). Using the standard error of measurement to identify important changes on the Asthma Quality of Life Questionnaire. Quality of Life Research, 11, 1-7.
70. 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, 354-362.