Abstract
The US health-care transition demands increased accountability for medical care. This has contributed to increased interest in documenting valued medical outcomes including improvements in health-related quality of life and treatment satisfaction. These data can only be obtained validly by asking patients directly about their current health state, perception of well-being, and satisfaction with care. A core set of well-validated instruments have been developed to measure health-related quality of life in patients with cancer. As these are employed with increasing frequency, rigorous quality assurance of data collection is critical. Because of the necessity of quality control, patient-reported data collection can be labor-intensive and prohibitively costly. However, time and cost-saving methods, such as centralized telephone survey methods or on-site direct data entry via interactive computer, can guarantee high-quality data while minimizing costs. Justification of the need for these methods and a brief description are provided.
Article PDF
Similar content being viewed by others
Avoid common mistakes on your manuscript.
References
Aaronson NK, Beckman J (1987) The quality of life of cancer patients. (Monograph Series of the European Organization for Research on Treatment of Cancer (EORTC), vol 17) Raven Press, New York
Aaronson NK, Ahmedzai S, Bullinger M, et al (1991) The EORTC Core Quality-of-Life Questionnaire: interim results of an international field study. In: Osoba D (ed) Effect of cancer on quality of life. CRC Press, Boca Raton, Fla, pp 185–203
Aaronson NK, Ahmedzai S, Bergman B, et al (1993) The European Organization for Research and Treatment of Cancer QLQ-C30: a quality of life instrument for use in international clinical trials in oncology. J Natl Cancer Inst 85:365–376
Anderson JP, Kaplan RM, Berry CC, et al (1989) Interrater reliability of function assessment for a health status measure: the quality of well-being scale. Med Care 27:1076–1084
Apgar V (1953) Proposal for new methods of evaluation of newborn infants. Anesth Analg 32:260
Baum M, Priestman T, West RR, Jones EM (1980) A comparison of subjective responses in a trial comparing endocrine with cytotoxic treatment in advanced carcinoma of the breast. Eur J Cancer 16 [Suppl 1]:223–226
Barofsky I, Sugarbaker PH (1990) Cancer. In: Spilker B (ed) Quality of life assessments in clinical trials. Raven Press, New York, pp 419–439
Bergner J, Bobbitt RA, Carter WB, Gilson BS (1981) The Sickness Impact Profile: development and final revision of a health status measure. Med Care 19:787–806
Boyd NF, Selby PJ, Sutherland HJ, Hogg S (1988) Measurement of the clinical status of patients with breast cancer: evidence for the validity of self assessment with linear analogue scales. J Clin Epidemiol 41:243–250
Boyd NF, Sutherland HJ, Heasman KZ, et al (1990) Whose utilities for decision analysis? Med Decis Making 10:58–67
Calman KC (1984) The quality of life in cancer patients — an hypothesis. J Med Ethics 10:124–125
Canadian Erythropoietin Study Group (1990) Association between recombinant human erythropoietin and quality of life and exercise capacity of patients receiving hemodialysis. Br Med J 300:573–578
Cella DF, Cherin EA (1988) Quality of life during and after cancer treatment. Comprehensive Therapy 14:69–75
Cella DF, Tulsky DS (1990) Measuring quality of life today: methodological aspects. Oncology 4:29–38
Cella DF, Lee-Riordan D, et al (1989) Quality of life in advanced cancer: three new disease-specific measures. Proc ASCO 8:315
Cella DF, Tulsky DS, Gray G, et al (1993) The Functional Assessment of Cancer Therapy (FACT) scale: development and validation of the general version. J Clin Oncol 11:570–579
Coates A, Gebski V, Stat M, for the Australian-New Zealand Breast Cancer Trials Group (1987) Improving the quality of life during chemotherapy for advanced breast cancer. N Engl J Med 317:1490
Cox DR, Fitzpatrick R, Fletcher AE, et al (1992) Quality of life assessments: can we keep it simple? J R Statist Soc 155:353–393
DeHaes JCJM, Knippenberg FCE van, Neijt JP (1990) Measuring psychological and physical distress in cancer patients: structure and application of the Rotterdam Symptom Checklist. Br J Cancer 62:1034–1038
Donovan K, Sanson-Fisher RW, Redman S (1989) Measuring quality of life in cancer patients. J Clin Oncol 7:959–968
Drummond MF, Stoddart GL, Torrance GW (1987) Methods for economic evaluation of health care programmes. Oxford University Press, Oxford
Fayers PM, Jones DR (1983) Measuring and analysing quality of life in cancer clinical trials: a review. Statist Med 2:429–446
Feeny D, LaBelle R, Torrance GW (1990) Integrating economic evaluations and assessments. In: Spilker B (ed) Quality of life assessment in clinical trials. Raven Press, New York, pp 71–83
Ferrans CE (1990) Development of a quality of life index for patients with cancer. Oncol Nurs Forum 17 [Suppl]: 15–21
Fetting JH (1988) Evaluating quality and quantity of life in breast cancer adjuvant trials. J Clin Oncol 6:1795–1797
Ganz PA, Schag CAC, Lee JJ, Sim MS (1992) The CARES: a genetic measure of health-related quality of life for patients with cancer. Quality Life Res 1:19–29
Gelber RD, Goldhirsch A, Cavalli F (1991) Quality-of-life adjusted evaluation of adjuvant therapies for operable breast cancer. Ann Intern Med 114:621–628
George L, Bearon L (1980) Quality of life in older persons: meaning and measurement. Human Sciences Press, New York
Gotay CC, Korn EL, McCabe MS, et al (1992) Quality-of-life assesent in cancer treatment protocols: research issues in protocol development. J Natl Cancer Inst 84:575–579
Hays RD, Sherbourne CD, Mazel RM (1993) The RAND 36-item health survey 1.0. Health Econ 2:217–227
Hays RD, Stewart AL (1990) The structure of self-reported health in chronic disease patients. Psychol Assess J Consult Clin Psychol 2:22–30
Jacobson NS, Truax P (1991) Clinical significance: a statistical approach to defining meaningful change in psychotherapy research. J Consult Clin Psychol 59:12–19
Jaeschke R, Singer J, Guyatt GH (1989) Measurement of health status: ascertaining the minimal clinically important differences. Control Clin Trials 10:407–415
Kaplan RM, Bush JW, Berry CC (1976) Health status: types of validity and the Index of Well-Being. Health Serv Res 11:478–507
Llewellyn-Thomas HA, Sutherland HJ, Tritchler DL, et al (1991) Benign and malignant breast disease: the relationship between women's health status and health values. Med Decis Making 11:180–188
McHorney CA, Ware JE, Rogers W, et al (1992) The validity and relative precision of MOS short-and long-form health status scales and Dart-mouth COOP charts: results from the medical outcomes study. Med Care 30:MS253-MS265
Moinpour CM, Feigl P, Metch B, et al (1989) Quality of life end points in cancer clinical trials: review and recommendations. J Natl Cancer Inst 81:485–495
Osoba D (ed) (1991) Effect of cancer on quality of life. CRC Press, Boca Raton, Fla
Padilla GV, Grant MM (1985) Quality of life as a cancer nursing outcome variable. Am Nurs Sci 8:45–60
Padilla GV, Presant C, Grant MM, et al (1983) Quality of life index for patients with cancer. Res Nurs Health 6:117–126
Priestman TJ, Baum M (1976) Evaluation of quality of life in patients receiving treatment for advanced breast cancer. Lancet I:899–901
Sadura A, Pater J, Osoba D, et al (1992) Quality of life assessment: patient compliance with questionnaire completion. J Natl Cancer Inst 84:1023–1026
Schag CAC, Ganz P, Heinrich RL (1991) Cancer rehabilitation evaluation system-short form: a cancer specific rehabilitation and quality of life instrument. Cancer 68:1406–1413
Schipper H, Levitt M (1985) Measuring quality of life: risks and benefits. Cancer Treat Rep 69:1115–1123
Schipper H, Clinch J, McMurray A, Levitt M (1984) Measuring the quality of life of cancer patients: the Functional Living Index-Cancer: development and validation. J Clin Oncol 2:472–483
Selby PJ, Chapman JAW, Etazadi-Amoli J, et al (1984) The development of a method for assessing the quality of life of cancer patients. Br J Cancer 50:13–22
Skeel RT (1989) Quality of life assessment in cancer clinical trials-it's time to catch up. J Natl Cancer Inst 81:472–473
Slevin ML, Plant H, Lynch D, et al (1988) Who should measure quality of life, the doctor or the patient? Br J Cancer 57:109
Spitzer WO, Dobson AJ, Hall J, et al (1981) Measuring the quality of life of cancer patients: a concise QL-Index for use by physicians. J Chronic Dis 34:585–597
Tannock IF (1991) Management of breast and prostate cancer: how does quality of life enter the equation? In: Tchekmedyian NS, Cella DF (eds) Quality of life in oncology practice and research. Dominus, Williston Park, NY, pp 81–88
Tannock IF, Boyd NF, DeBoer G, et al (1988) A randomized trial of two dose levels of cyclophosphamide, methotrexate and fluorouracil chemotherapy for patients with metastatic breast cancer. J Clin Oncol 6:1377
Tchekmedyian NS, Cella DF (eds) (1991) Quality of life in current oncology practice and research. Dominus, Williston Park, NY
Till JE, McNeil BJ, Busch RS (1984) Measurement of multiple components of quality of life. Cancer Treat Symp 1:177–181
Till JE, Sutherland HJ, Meslin EM (1992) Is there a role for preference assessments in research on quality of life in oncology. Qual Life Res 1:31–40
Torrance GW (1986) Measurement of health state utilites for economic appraisal: a review article. J Health Econ 5:1–30
Tsevat J, Goldman L, Soukup JR, Lee TH, (1990) Stability of utilities in survivors of myocardial infarction. Med Decis Making 10:323
Tsevat J, Cook EF, Soukop JR, et al (1991) Utilities of the seriously ill (abstract). Clin Res 39:589A
US Department of Health and Human Services (DHHS), Public Health Service, National Institutes of Health (1990) Quality of life assessment in cancer clinical trials: report of the Workshop on Quality of Life Research in Cancer Clinical Trials. Prevention and Control, National Cancer Institute, Division of Cancer Prevention and Control, Bethesda, MD
Ware J (1991) Measuring functioning, well-being and other generic health concepts. In: Osoba D (ed) Effect of cancer on quality of life. CRC, Boca Raton, Fla, pp 7–23
Ware JE, Sherbourne CD (1992) The MOS 36-Item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care 30:473–483
Wood-Dauphinee S, Williams JI (1991) The Spitzer Quality-of-Life Index: it performance as a measure. In: Osoba D (ed) Effect of cancer on quality of life. CRC Press, Boca Raton, Fla, pp 169–184
Author information
Authors and Affiliations
Rights and permissions
About this article
Cite this article
Cella, D.F. Methods and problems in measuring quality of life. Support Care Cancer 3, 11–22 (1995). https://doi.org/10.1007/BF00343916
Issue Date:
DOI: https://doi.org/10.1007/BF00343916