Abstract
Intensive antineoplastic treatmentprotocols have been developed and implemented in controlled clinical trials with the goal of improving the survival of pediatric cancer patients. Multidimensional health outcome evaluation of this cohort of pediatric cancer patients being treated with these modern regimens is essential in order to enhance health-related quality of life. The Pediatric Cancer Quality of Life Inventory(PCQL)was developed to be a standardized assessmentinstrument to assess systematically pediatric cancer patient's health-related quality of life outcomes. The PCQL was administered to 291 pediatric cancer patients and their parents at various stages of treatment. The aim of the present studywas to present the development,descriptive statistics, and cross-informant variance for the PCQL items. Large variability in symptoms and health-related problems were found as expected given the wide heterogeneity in the patient population sampled. Patient/parent concordance on individual items averaged in the medium effect size range. The findings underscore the importance of measuring both patient report and parent report of patient symptoms and problems in pediatric cancer health-related quality of life assessment.
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References
Aaronson, N. K. (1991). Methodological issues in assessing the quality of life of cancer patients. Cancer 67: 844–850.
Achenbach, T. M., McConaughy, S. H., and Howell, C. T. (1987). Child/adolescent behavioral and emotional problems: Implications of cross-informant corre lations for situational specificity. Psychol. Bull. 101: 213–232.
Aday, L. A. (1989). Designing and Conducting Health Surveys: A Comprehensive Guide, Jossey-Bass, San Francisco.
Blazeby, J. M., Williams, M. H., Alderson, D., and Farndon, J. R. (1995). Observer variation in assessment of quality of life in patients with oesophageal cancer. Br. J. Surg. 82: 1200–1203.
Bleyer, W. A. (1990). The impact of childhood cancer on the United States and the world. CA-A Cancer J. Clin. 40: 355–367.
Boring, C. C., Squires, T. S., and Tong, T. (1991). Cancer statistics, 1991. CA-A Cancer J. Clin. 41: 19–36.
Bradlyn, A. S., and Pollock, B. H. (1996). Quality-of-life research in the Pediatric Oncology Group: 1991–1995. J. Natl. Cancer Inst. 20: 49–53.
Bradlyn, A. S., Harris, C. V., Warner, J. E., Ritchey, A. K., and Zaboy, K. (1993). An investigation of the validity of the Quality of We ll-Being Scale with pediatric oncology patients. Health Psychol. 12: 246–250.
Bradlyn, A. S., Ritchey, Harris, C. V., Moore, A. K., O'Brien, R. T., Parsons, S. K., and et al. (1995). Quality of Life Research in Pediatric Oncology: Research Methods and Barriers. Report from the American Cancer Society Workshop on Quality of Life in Children's Cancer: Implications for Practice and Research , American Cancer Society, Atlanta.
Cella, D. F., and Tulsky, D. S. (1990). Measuring quality of life today: Methodological aspects. Oncology 4: 29–38.
Cohen, J. (1988). Statistical Power Analysis for the Behavioral Sciences, Erlbaum, Hillsdale, NJ.
Costello, E. J., Edelbrock, C., Costello, A. J., Dulcan, M. K., Burns, B. J., and Brent, D. (1988). Psychopathology in pediatric primary care: The new hidden morbidity. Pediatrics 82: 415–424.
DeVillis, R. F. (1991). Scale Development: Theory and Applications, Sage, Newbury Park, CA.
Goodwin, D. A. J., Boggs, S. R., and Graham-Pole, J. (1994). Developme nt and validation of the Pediatric Oncology Quality of Life Scale. Psychol. Assess. 6: 321–328.
Gotay, C. C., Korn, E. L., McCabe, M. S., Moore, T. D., and Cheson, B. D. (1992). Quality of life assessment in cancer treatment protocols: Research issues in protocol development. J. Natl. Cancer Inst. 84: 575–579.
Guyatt, G. H., Bombardier, C., and Tugwell, P. X. (1986). Measuring disease-specific quality of life in clinical trials. Can. Med. Assoc. J. 134: 889–895.
Hintzman, D. L. (1980). Simpson's paradox and the analysis of memory retrieval. Educ. Psychol. Measure. 87: 398–410.
Hollingshead, A. B. (1975). Four Factor Index of Social Status, Yale University, New Haven.
Kirshner, B., and Guyatt, G. (1985). A methodological framework for assessing health indexes. J. Chron. Dis. 38: 27–36.
Lansky, L. L., List, M. A., Lanskey, S. B., Cohen, M. E., and Sinks, L. B. (1985). Toward the developme nt of a play performance scale for children. Cancer 56: 1837–1840.
Leplege , A., and Hunt, S. (1997). The problem of quality of life in medicine. JAMA 278: 47–50.
Magaziner, J., Simonsick, E. M., Kashner, T. M., and Hebel , J. R. (1988). Patient-proxy response comparability on measures of patient health and functional status. J. Clin. Epidemiol. 41: 1065–1074.
McHorney, C. A., Ware , J. E., Rogers, W., Racze k, A. E., and Lu, J. F. R. (1992). The validity and relative precision of MOS short-and long-form health status scales and Dartmouth COOP charts: Results from the Medical Outcomes Study. Med. Care 30: MS253-MS265.
Meyerowitz, B. E., Heinrich, R. L., and Schag, C. C. (1983). A competency-based approach to coping with cancer. In Burish, T. G., and Bradley, L. A. (eds.), Coping with Chronic Disease: Research and Application, Academic Press, New York, pp. 137–158.
Moinpour, C. M., Feigel, P., Metch, B., Hayden, K. A., Meyskens, F. L., and Crowley, J. (1989). Quality of life end points in cancer clinical trials: Review and recommendations. J. Natl. Cancer Inst. 81: 485–495.
Mulhern, R. K., Ochs, J., Armstrong, D., Horowitz, M., Friedman, A., Copeland, D., and Kun, L. (1989). Assessment of quality of life among pediatric patients with cancer. Psychol. Assess. 1: 130–138.
Pedhazur, E. J., and Schmelkin, L. P. (1991). Measurement, Design, and Analysis: An Integrated Approach , Erlbaum, Hillsdale, NJ.
Spieth, L. E., and Harris, C. V. (1996). Assessment of health-related quality of life in children and adolescents: An integrative review. J. Pediatr. Psychol. 21: 175–193.
Sprangers, M. A. G., and 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. J. Clin. Epidemiol. 45: 743–760.
SPSS, Inc. (1997). SPSS Base 7.5 Base Syntax Reference Guide [computer program] , SPSS, Inc., Chicago.
Testa, M. A., and Simonson, D. C. (1996). Assessment of quality-of-life outcomes. N. Engl. J. Med. 334: 835–840.
Van Knippenberg, F. C., and DeHaes, J. C. (1988). Measuring the quality of life of cancer patients: Psychometric properties of instruments. J. Clin. Epidemiol. 41: 1043–1053.
Varni, J. W. (1983). Clinical Behavioral Pediatrics: An Interdisciplinary Biobehavioral Approach , Pergamon Press, New York.
Varni, J. W., and Katz, E. R. (1994). The Pediatric Cancer Quality of Life Inventory (PCQL), Unpublished instrument.
Varni, J. W., and Setoguchi, Y. (1992). Screening for behavioral and emotional problems in children and adolescents with congenital or acquired limb deficiencies. Am. J. Dis. Child. 146: 103–107.
Varni, J. W., Katz, E. R., Colegrove, R., and Dolgin, M. (1995). Adjustment of children with newly diagnosed cancer: Cross-informant variance. J. Psychosoc. Oncol. 13: 23–38.
Varni, J. W., Blount, R. L., and Quiggins, D. J. (1998). Oncologic disorders. In Ammerman, R. T., and Campo, J. V. (eds.) , Handbook of Pediatric Psychology and Psychiatry. Vol II: Disease, Injury, and Illness. Allyn and Bacon, Boston, pp 313–346.
Wallander, J. L., and Varni, J. W. (1992). Adjustment in children with chronic physical disorders: Programmatic re search on a disability-stress-coping model. In La Greca, A. M., Siegel, L. J., Wallander, J. L., and Walker, C. E. (eds.), Stress and Coping in Child Health, Guilford, New York, pp. 279–298.
Ware, J. E. (1987). Standards for validating health measures: Definition and content. J. Chron. Dis. 40: 473–480.
Ware, J. E., and Sherbourne, C. D. (1992). The MOS 36-item short-form health survey (SF-36): I. Conceptual framework and item selection. Med. Care 30: 473–483.
Yarnold, P. R. (1996). Characterizing and circumventing Simpson's paradox for ordered bivariate data. Educ. Psychol. Measure. 56: 430–442.
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Varni, J.W., Katz, E.R., Seid, M. et al. The Pediatric Cancer Quality of Life Inventory (PCQL). I. Instrument Development, Descriptive Statistics, and Cross-Informant Variance. J Behav Med 21, 179–204 (1998). https://doi.org/10.1023/A:1018779908502
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DOI: https://doi.org/10.1023/A:1018779908502