Abstract
The Pediatric Cancer Quality of Life Inventory-32 (PCQL-32) has been developed to be a standardized assessment instrument to assess systematically pediatric cancer patient's health-related quality of life (HRQOL) outcomes. Multidimensional serial measurement of pediatric cancer patients' HRQOL in Phase III randomized controlled clinical trials is increasingly being recognized as an essential component in evaluating the comprehensive health outcomes of modern antineoplastic treatment protocols. The 32-item PCQL-32 short form was empirically derived from the PCQL long form (84-87 items), which was administered to 291 pediatric cancer patients and their parents during various stages of treatment. The feasibility (percentage of missing values per item) and range of measurement [percentage of minimum (floor effect) and maximum (ceiling effect) possible scores] was calculated for the five PCQL-32 scales and the total scale score. Feasibility for the PCQL-32 was very good, with less than .01% missing values. Range of measurement was full, with no ceiling effects (higher symptoms/problems) and low to moderate floor effects (lower symptoms/problems). The PCQL-32 demonstrated very good feasibility and range of measurement. In its short form, the PCQL-32 is practical for Phase III clinical trials. Future studies will test the utility of the PCQL-32 as a brief serial measure for monitoring the HRQOL outcomes for children and adolescents with cancer.
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REFERENCES
Aaronson, N. K. (1991). Methodological issues in assessing the quality of life of cancer patients. Cancer 67: 844-850.
Baker, D. W., Hays, R. D., and Brook, R. H. (1997). Understanding changes in health status: Is the floor phenomenon merely the last step of the staircase? Med. Care 35: 1-15.
Bindman, A. B., Keane, D., and Lurie, N. (1990). Measuring health changes among severely ill patients. The floor phenomenon. Med. Care 28: 1142-1152.
Bleyer, W. A. (1990). The impact of childhood cancer on the United States and the world. CA-A Cancer J. Clin. 40: 355-367.
Bradlyn, A. S., and Pollock, B. H. (1996). Quality-of-li fe 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 Well-Being Scale with pediatric oncology patients. Health Psychol. 12: 246-250.
Bradlyn, A. S., Harris, C. V., and Spieth, L. E. (1995). Quality of life assessment in pediatric oncology: A retrospective review of Phase III reports. Soc. Sci. Med. 41: 1463-1465.
Bradlyn, A. S., Ritchey, A. K., Harris, C. V., Moore, A. K., O'Brien, R. T., Parsons, S. K., Patterson, K., and Pollock, B. H. (1996). Quality of life research in pediatric oncology: Research methods and barriers. Cancer 78: 1333-1339.
Cella, D. F., and Bonomi, A. E. (1995). Measuring quality of life: 1995 update. Oncology (Suppl. ) 9: 47-60.
Copeland, D. R. (1992). Neuropsychologic al and psychosocial effects of childhood leukemia and its treatment. CA-A Cancer J. Clin. 42: 283-295.
DeLaat, C. A., and Lampkin, B. C. (1992). Long-term survivors of childhood cancer: Evaluation and identification of sequelae of treatment. CA-A Cancer J. Clin. 42: 263-282.
Essink-Bot, M. L., Krabbe, P. F. M., Bonsel, G. J., and Aaronson, N. K. (1997). An empirical comparison of four generic health status measures: The Nottingham Health Profile, the Medical Outcomes Study 36-Item Short-Form Health Survey, the COOP/WONCA Charts, and The EuroQol Instrument. Med. Care 35: 522-537.
Fairclough, D. L., and Cella, D. F. (1996). Functional Assessment of Cancer Therapy (FACT-G): Non-response to individual questions. Qual. Life Res. 5: 321-329.
Feeny, D., Furlong, W., Barr, R. D., Torrance, G. W., Rosenbaum, P., and Weitzman, S. (1992). A comprehensive multiattribute system for classifying the health status of survivors of childhood cancer. J. Clin. Oncol. 10: 923-928.
Goodwin, D. A. J., Boggs, S. R., and Graham-Pole, J. (1994). Development and validation of the Pediatric Oncology Quality of Life Scale. Psychol. Assess. 6: 321-328.
Hollingshead, A. B. (1975). Four Factor Index of Social Status, Yale University, New Haven, CT.
Madan-Swain, A., and Brown, R. T. (1991). Cognitive and psychosocial sequelae for children with acute lymphocytic leukemia and their families. Clin. Psychol. Rev. 11: 267-294.
McHorney, C. A., and Tarlow, A. R. (1995). Individual-patient monitoring in clinical practice: Are available health status surveys adequate? Qual. Life Res. 4: 293-307.
McHorney, C. A., Ware, J. E., Rogers, W., Raczek, 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.
McHorney, C. A., Ware, J. E., and Raczek, A. E. (1993). The MOS 36-item short-form health survey (SF-36). II. Psychometric and clinical tests of validity in measuring physical and mental health constructs. Med. Care 31: 247-263.
McHorney, C. A., Ware, J. E., Lu, J. F. R., and Sherbourne, C. D. (1994). The MOS 36-item shortform health survey (SF-36). III. Tests of data quality, scaling assumptions, and reliability across diverse patient groups. Med. Care 32: 40-66.
Morris, J., and Coyle, D. (1994). Quality of life questionnaires in cancer clinical trials: Imputing missing values. Psycho-Oncology 3: 215-222.
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.
Osoba, D. (1994). Lessons learned from measuring health-related quality of life in oncology. J. Clin. Oncol. 12: 608-616.
Parker, S. L., Tong, T., Bolden, S., and Wingo, P. A. (1996). Cancer statistics, 1996. CA-A Cancer J. Clin. 46: 5-27.
Pedhazur, E. J., and Schmelkin, L. P. (1991). Measurement, Design, and Analysis: An Integrated Approach, Erlbaum, Hillsdale, NJ.
Reaman, G. H., and Haase, G. M. (1996). Quality of life research in childhood cancer: The time is now. Cancer 78: 1330-1332.
SPSS (1997). SPSSÒ 7.5 for Windows, SPSS, Chicago.
Testa, M. A., and Simonson, D. C. (1996). Assessment of quality-of-life outcomes. N. Engl. J. Med. 334: 835-840.
Varni, J. W., Blount, R. L., and Quiggins, D. J. (1998a). 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.
Varni, J. W., Katz, E. R., Seid, M., Quiggins, D. J. L., and Friedman-Bender, A. (1998b). The Pediatric Cancer Quality of Life Inventory-32 (PCQL-32). I. Reliability and validity. Cancer 82: 1184-1196.
Varni, J. W., Katz, E. R., Seid, M., Quiggins, D. J. L., Friedman-Bender, A., and Castro, C. M. (1998c). The Pediatric Cancer Quality of Life Inventory (PCQL). I. Instrument development, descriptive statistics, and cross-informant variance. J. Behav. Med. 21: 179-204.
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.
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Varni, J.W., Rode, C.A., Seid, M. et al. The Pediatric Cancer Quality of Life Inventory-32 (PCQL-32). II. Feasibility and Range of Measurement. J Behav Med 22, 397–406 (1999). https://doi.org/10.1023/A:1018730204210
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DOI: https://doi.org/10.1023/A:1018730204210