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Measuring quality of life in oncology: is it worthwhile? I. Meaning, purposes and controversies
ALI MONTAZERI BSc, MPH,
CHARLES R. GILLIS MD, FRCP (Glas), FFPHM,
JAMES McEWEN FRCP(Glas), FFPHM,
Corresponding Author
ALI MONTAZERI BSc, MPH
PhD candidate
Department of Public Health, University of Glasgow, Scotland, UK
address: Ali Montazeri, 2 Lilybank Gardens, Department of Public Health, University of Glasgow, Glasgow G12 8RZ, UK.Search for more papers by this authorCHARLES R. GILLIS MD, FRCP (Glas), FFPHM
Director
West of Scotland Cancer Surveillance Unit, Ruchill Hospital, Glasgow, Scotland, UK
Search for more papers by this authorJAMES McEWEN FRCP(Glas), FFPHM
Professor and Head
Department of Public Health, University of Glasgow, Scotland, UK
Search for more papers by this authorALI MONTAZERI BSc, MPH,
CHARLES R. GILLIS MD, FRCP (Glas), FFPHM,
JAMES McEWEN FRCP(Glas), FFPHM,
Corresponding Author
ALI MONTAZERI BSc, MPH
PhD candidate
Department of Public Health, University of Glasgow, Scotland, UK
address: Ali Montazeri, 2 Lilybank Gardens, Department of Public Health, University of Glasgow, Glasgow G12 8RZ, UK.Search for more papers by this authorCHARLES R. GILLIS MD, FRCP (Glas), FFPHM
Director
West of Scotland Cancer Surveillance Unit, Ruchill Hospital, Glasgow, Scotland, UK
Search for more papers by this authorJAMES McEWEN FRCP(Glas), FFPHM
Professor and Head
Department of Public Health, University of Glasgow, Scotland, UK
Search for more papers by this authorAbstract
This is the first of a two-part paper on quality of life in cancer patients. This part examines some of the fundamental issues in health-related quality of life measurement with particular attention being given to cancer medicine, thus helping to focus the direction and methodological rigour required in future investigations. Relevant topics are discussed to illustrate the importance of quality of life measures in cancer care. A perspective on the meaning of ‘outcome’ and ‘quality of life’ are presented to demonstrate the controversies that exist in the field. It is concluded that despite methodological limitations, quality of life measures have a potential role in advancing cancer care.
References
- Aaronson N.K. (1989) Quality of life assessment in clinical trials: methodological issues. Controlled Clinical Trials, 10, 195s–208s.
- Aaronson N.K. (1990) Quality of life research in cancer clinical trials: a need for common rules and language. Oncology, 4, 59–66.
- N.K. Aaronson & J.H. Beckmann (eds) (1987) The Quality of Life of Cancer Patients. Raven Press, New York .
- Aaronson N.K., Bullinger M. & Ahmedzai S. (1988) A modular approach to quality-of-life assessment in cancer clinical trials. Recent Results in Cancer Research, 111, 231–249.
- Aaronson N.K., Ahmedzai S., Bergman B., Bullinger M., Cull A., Duez N.J., Filiberti A., Flechtner H., Fleishman S.B., de Haes J.C.J.M., Kaasa S., Klee M., Osoba D., Razavi D., Rofe P.B., Schraub S., Sneeuw K., Sullivan M., Takeda F. (1993) The European Organisation for Research and Treatment of Cancer QLQ-C30: a quality of life instrument for use in international clinical trials in oncology. Journal of National Cancer Institute, 85, 365–376.
- Andersen R.M., Davidson P.L. & Ganz P.A. (1994) Symbiotic relationships of quality of life, health services research and other health research. Quality of Life Research, 3, 365–371.
- Anderson R.T., Aaronson N.K. & Wilkind D. (1993) Critical review of the international assessments of health-related quality of life. Quality of Life Research, 2, 369–395.
- Bardsely M.J. & Coles J.M. (1992) Practical experiences in auditing patient outcomes. Quality in Health Care, 1, 124–130.
- Bell D.R., Tannock I.F. & Boyd, N.F. (1985) Quality of life measurement in breast cancer patients. British Journal of Cancer, 51, 577–580.
- Bergman B., Aaronson N.K., Ahmedzai S., Kassa S. & Sullivan M. (1994) The EORTC QLQ-LC13: a modular supplement to the EORTC core quality of life questionnaire (QLQ-C30) for use in lung cancer clinical trials. European Journal of Cancer, 30A, 635–642.
- Bermhard J., Gusset H. & Humy C. (1995) Quality of life assessment in cancer clinical trials: an intervention by itself Supportive Care in Cancer, 3, 66–71.
- Bowling A. (1991) Measuring Health: a review of quality of life measurement scales. Open University Press, Buckingham .
- Bowling A. (1995) Measuring disease: A review of disease-specific quality of life measurement scales. Buckingham : Open University Press.
- Breslow L. (1972) A quantitative approach to the World Health Organisation definition of health: physical, mental, and social well-being. International Journal of Epidemiology, 1, 347–355.
- Calman K.C. (1984) The quality of life in cancer patients—an hypothesis. Journal of Medical Ethics, 10, 124–127.
- Calman K.C. (1987) Definition and dimensions of quality of life. In: N.K. Aaronson & J.H. Beckmann, (eds) The Quality of Life of Cancer Patients, pp. 1–9. Raven Press, New York .
- Campbell A., Converse P., Rodgers W.L. (1976) The Quality of American Life: perception, evaluations, and satisfactions. Russell Sage Publications, New York .
- Campbell A., Converse P.E. & Rodgers W.L. (1988) The quality of life: what is it? How it should be measured Oncology, 2, 69–74.
- Cella D.F. (1995a) Measuring quality of life in palliative care. Seminars in Oncology, 22 (suppl. 3), 73–81.
- CeIIa D.F. (1995b) Methods and problems in measuring quality of life. Supportive Care in Cancer, 3, 11–22.
- Cella D.F. & Tulsky D.S. (1990) Measuring quality of life today: methodological aspects. Oncology, 4, 29–38.
- Cella D.F., Davis S. & Tulsky D.S. (1993) Quality of life in cancer: definition, purpose, and method of measurement. Cancer Investigation, 11, 327–336.
- Cella D.F., Bonomi A.E., Lloyd S.R., Tulsky D.S., Kaplan E. & Bonomi P. (1995) Reliability and validity of the Functional Assessment of Cancer Therapy-Lung (FACT-L) quality of life instrument. Lung Cancer, 12, 199–220.
- Clark A. & Fallowfield L. (1986) Quality of life measurements in patients with malignant disease: a review. Journal of Royal Society of Medicine, 79, 165–169.
- Coggon D. & Inskip H. (1994) Is there an epidemic of cancer British Medical Journal, 308, 705–708.
- de Haes J.C.J.M. & van Knippenberg F.C.E. (1985) The quality of life of cancer patients: a review of the literature. Social Science and Medicine, 20, 809–817.
- Donabedian A. (1985) Explorations in quality assessment and monitoring. Vol 3. The methods and findings of quality assessment and monitoring: an illustrated analysis, p. 256. Health Administration Press, Ann Arbor .
- Donovan J.L., Frankel S.J. & Eyles J.D. (1993) Assessing the need for health status measures. Journal of Epidemiology and Community Heatlh, 47, 158–162.
- Donovan K., Sanson-Fisher R.W. & Redman S. (1989) Measuring quality of life in cancer patients. Journal of Clinical Oncology, 7, 959–968.
- Ebrahim S. (1990) Measurement of impairment, disability and handicap. In: A. Hopkins & D. Costain (eds) Measuring the Outcomes of Medical Care, pp. 27–41. The Royal College of Physicians of London, King's Fund Centre For Health Services Development, London .
- Fallowfield L. (1990) The Quality of Life: the missing measurement in health care, p. 19. Souvenir Press, London .
- Fallowfield L.J. (1993) Quality of life measurement in breast cacer. Journal of the Royal Society of Medicine, 86, 10–12.
-
Fallowfield L. (1994) Measuring the quality of life in breast cancer. In: J. Orley &
W. Kuyken (eds)
Quality of Life Assessment: international perspectives, pp. 109–127. Spring-er-Verlag,
Berlin
.
10.1007/978-3-642-79123-9_9 Google Scholar
- Fitzpatrick R., Fletcher A., Gore S., Jones D., Spiegelhalter D. & Cox D. (1992) Quality of life measures in health care. I: Application and issures in assessment. British Medical Journal, 305, 1074–1077.
- Fled R. (1995) Endpoints in cancer clinical trials: is there a need for measuring quality of life Supportive Care in Cancer, 3, 23–27.
- Fletcher A., Gore S., Jones D., Fitzpatrick R., Spiegelhalter D. & Cod D. (1992) Quality of life measures in health care. II: Design, analysis, and interpretation. British Medical Journal, 305, 1145–1148.
- Fries J.F. & Spitz P.W. (1990) The hierarchy of patient outcomes. In: B. Spilker (ed.) Quality of Life Assessments in Clinical Trials, pp. 25–35. Raven Press, New York .
-
Ganz P.A. (1994) Quality of life and the patient with cancer: individual and policy implications.
Cancer, 74, 1445–1452.
10.1002/1097-0142(19940815)74:4+<1445::AID-CNCR2820741608>3.0.CO;2-# CAS PubMed Web of Science® Google Scholar
- Gelber R.D., Cole B.F. & Goldhirsch A., (1993) How to compare quality of life of breast cancer patients in clinical trials. Recent Results in Cancer Research, 127, 221–233.
- Greer D.S. (1987) Quality of life measurement in the clinical realm. Journal of Chronic Disease, 40, 629–630.
- Gulliford M.C. (1992) Evaluationg prognostic factors: implications for measurement of health care outcome. Journal of Epidemiology and Community Health, 46, 323–326.
- Hays R.D., Anderson R. & Revicki D. (1993) Psychometric considerations in evaluating health-related quality of life measures. Quality of Life Research, 2, 441–449.
- Hopwood P., Stephens R.J. & Machin D. (1994) Approaches to the analysis of quality of life data: experiences gained from a Medical research Council Lung Cancer Worlung Party palliative chemotherapy trial. Quality of Life Research, 3, 339–352.
- Hunt S.M. & McKenna S.P. (1992) The QLDS: a scale for the measurement of quality of life in depression. Health Policy, 22, 307–319.
- Jenkinson C. (1994) Measuring health and medical outcomes: an overview. In: C. Jenkinson (ed.) Measuring Health and Medical Outcomes, pp. 1–6. UCL Press, London .
- Katz S. (1987) The science of quality of life. Journal of Chronic Disease, 40, 459–463.
- Kind P. & Carr-Hill R. (1987) The Nottingham Health Profile: a useful tool for epidemiology. Social Science and Medicine, 25, 905–910.
- Kind P. & Gudex C.M. (1994) Measuring health status in the community: a comparison of methods. Journal of Epidemiology and Community Health, 48, 86–91.
- Kleinman A. (1986) Culture, the quality of life and cancer pain: antropological and cross-cultural perspectives. In: V. Ventrafridda (ed.) Assessment of Quality of Life and Cancer Treatment. Excerpta Medical International Congress Series, 702, 43–50.
- Maguire P. & Selby P. (1989) Assessing quality of life in cancer patients. British Journal of Cancer, 60, 437–440.
-
McEwen J. (1993) The Nottinggham Health Profile. In: S.R. Walker &
R.M. Rosser (eds)
Quality of Life Assessment: key issues in 1990s, pp. 111–130. Kluwer Academic Publishers,
Lancaster
.
10.1007/978-94-011-2988-6_5 Google Scholar
- Montazeri A., Gillis C.R. & McEwen J. (1996a) Measuring quality of life in oncology: is it worthwhile? II. Experiences from the treatment of cancer. European Journal of Cancer Care, 5, 168–175.
- Montazeri A., Milroy R., Gillis C.R. & McEwen J. (1996b) Quality of life: perception of lung cancer patients. A case-control study. European Journal of Cancer Care. (in press).
- Montazeri A., Milroy R., Macbeth F.R., McEwen J. & Gillis C.R. (1996c) Understanding patients: let s talk about it. A study of cancer communication. Supportive Care in Cancer, 4, 97–101.
- Mor V. (1987) Cancer patients' quality of life over the disease course: lessons from the real world. Journal of Chronic Disease, 40, 535–544.
- Orchard C. (1994) Comparing healthcare outcomes. British Medical Journal, 308, 1493–1496.
- D. Osoba, (ed.) (1991) Effects of Cancer on Quality of Life. CRC Press, Boca Raton , Florida .
- Patrick D.L. & Bergner M. (1990) Measurement of health status in the 1990s. Annual Review of Public Health, 11, 165–183.
- Patrick D.L. & Errickson P. (1993) Health Status and Health Policy; quality of Life in health care. Evaluating and resources allocation. Oxford University Press, New York .
-
Read J.L. (1993) The new era of quality of life assessment. In: S.R. Walker &
R.M. Rosser (eds)
Quality of Life Assessment: key issues in the 1990s, pp. 3–10. Kluwer Academic Publishers,
Lancaster
.
10.1007/978-94-011-2988-6_1 Google Scholar
- Rosser R. (1993) The history of health related quality of life in 10 1/2 paragraphs. Journal of the Royal Society of Medicine, 86, 315–318.
- Schipper H., Clinch J. & Powell V. (1990) Definitions and conceptual issues. In: B. Spilker (ed.) Quality of Life Assessment in Clinical Trials, pp. 11–24. Raven Press, New York .
- Schipper H. (1990) Guidelines and caveats for quality of life measurement in clinical practice and research. Oncology, 4, 51–57.
- Selby P. (1993) Measuring the quality of life of patients with cancer. In: S.R. Walker & R. Rosser (eds) Quality of Life Assessment: key issues in the 1990s, pp. 235–267. Kluwer Academic Publishers, Lancaster .
- Slevin M.L., Plant H., Lynch D., Drinkwater J. & Gregory W.M. (1988) Who should mesasure the quality of life, the doctor or the patient British Journal of Cancer, 57, 109–112.
- Spitzer W.O., Dobson A.J., Hall J., Chesterman E., Levi J., Shepherd R., Battista R.N. & Catchlove B.R. (1981) Measuring the quality of life of cancer patient. Journal of Chronic Disease, 34, 585–597.
- Spitzer W.O. (1987) State of science 1986: quality of life and functional status as target variables for research. Journal of Chronic Disease, 40, 465–471.
- Stouman K. & Falk I. (1936) Health indices: a study of objective indices of health in relation to environment and sanitation. Bulletin of Health League of Nations, 8, 63–69.
- Strain J.J. (1990) The evolution of quality of life evaluations in cancer therapy. Oncology, 4, 22–26.
- Tchekmedvian N.S. & Cella D.F (1990) Foreword. Oncology, 4, 1.
- Torrance G.W. (1987) Utility approach to measuring health-related quality of life. Journal of Chronic Disease, 40, 593–600.
- van Knippenberg F.C.E. & de Haes J.C.J.M. (1988) Measuring the quality of life of cancer patients: psychometric properties of instruments. Journal of Chronic Disease, 41, 1043–1053.
- Visser M.C., Fletcher A.E., Parr G., Simpson A. & Bulpitt C.J. (1994) A comparison of three quality of life instruments in subjects with angina pectoris: the Sickness Impact Profile, the Nottingham Health Profile, and the Quality of Well Being Scale. Journal of Clinical Epidemiology, 47, 157–163.
-
S.R. Walker &
R.M. Rosser (eds) (1993) Quality of Life Assessment: key issues in the 1990s. Kluwer Academic Publishers,
Lancaster
.
10.1007/978-94-011-2988-6 Google Scholar
- Ware J.E. (1987) Standards for validating health measures: definition and content. Journal of Chronic Disease, 40, 473–480.
- Warner S.C. & Williams J.I. (1987) The meaning in life scale: determining the reliability and validity of measure. Journal of Chronic Disease, 40, 503–512.
- Weastlake L. & George S.L. (1994) Subjective health status of single homeless people in Sheffield. Public Health, 108, 111–119.
-
WHOQOL Group (1994) The development of the World Health Organisation quality of life assessment instrument (the WHO-QOL). In: J. Orley &
W. Kuyken (eds)
Quality of Life Assessment: international perspectives, pp. 41–57. Springer-Verlag,
Berlin
.
10.1007/978-3-642-79123-9_4 Google Scholar
- Wilkin D., Hallam L. & Dogget M. (1992) Measures of Need and Outcome for Primary Care. Oxford University Press, Oxford .
- Wood-Dauphinee S. & Williams J.I. (1987) Reintegration to normal living as a proxy to quality of life. Journal of Chronic Disease, 40, 491–499.
