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Patient, Clinician, and Population Perspectives on Determining the Clinical Significance of Quality-of-Life Scores

      Despite the success of screening and treatment of major cancers in the United States, cancer remains a chronic condition dominated by symptoms and treatment-related adverse effects. Because of these often taxing symptoms and adverse effects, numerous studies have been conducted to document the effects of cancer diagnosis and treatment on the quality of life (QOL) of patients. But there has been limited investigation of the clinical significance of QOL scores. This article examines the clinical significance of QOL scores from 3 key perspectives: patients, clinicians, and the general population. The patient's perspective includes an evaluation of the size of difference in scores that individual patients can detect and regard as important. The clinician perspective relies on whether the clinician believes the patient's condition has stayed the same vs whether changes have occurred (decline or improvement). The population perspective represents a democratic process in which the input or votes of a community of people are used to determine if health state A is clinically significantly different from health state B. While many clinicians and researchers advocate for QOL to be defined from the patient's perspective, the reality is that QOL is often defined by clinicians in terms of observable events. Even when measures are used in which the patient identifies how his or her life has been affected, it is often the clinician who interprets the clinical importance of this information. The clinician's perspective has value in framing an experience within the context of what is usual for a group of individuals, and the population perspective provides inputs as to how society may use limited resources. However, we conclude that a more prominent role for the patient's QOL perspective is needed.
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      REFERENCES

        • Guyatt GH
        • Osoba D
        • Wu AW
        • Wyrwich KW
        • Norman GR
        • Clinical Significance Consensus Meeting Group
        Methods to explain the clinical significance of health status measures.
        Mayo Clin Proc. 2002; 77: 371-383
        • Aaronson NK
        Quality of life: what is it? how should it be measured?.
        Oncology (Huntingt). 1988; 2 (64.): 69-76
        • Cella DF
        • Bonomi AE
        Measuring quality of life: 1995 update.
        Oncology (Huntingt). 1995; 9: 47-60
        • Patrick DL
        • Erickson P
        Health Status and Health Policy: Quality of Life in Health Care Evaluation and Resource Allocation. Oxford University Press, New York, NY1993
        • Jaeschke R
        • Singer J
        • Guyatt GH
        Measurement of health status: ascertaining the minimal clinically important difference.
        Control Clin Trials. 1989; 10: 407-415
        • van Walraven C
        • Mahon JL
        • Moher D
        • Bohm C
        • Laupacis A
        Surveying physicians to determine the minimal important difference: implications for sample-size calculation.
        J Clin Epidemiol. 1999; 52: 717-723
        • Spitzer WO
        • Dobson AJ
        • Hall J
        • et al.
        Measuring the quality of life of cancer patients: a concise QL-index for use by physicians.
        J Chronic Dis. 1981; 34: 585-597
        • Cella DF
        • Tulsky DS
        • Gray G
        • et al.
        The Functional Assessment of Cancer Therapy scale: development and validation of the general measure.
        J Clin Oncol. 1993; 11: 570-579
        • Ware Jr, JE
        SF-36 Health Survey: Manual and Interpretation Guide. New England Medical Center, Boston, Mass1993
        • Aaronson NK
        • Ahmedzai S
        • Bergman B
        • et al.
        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. 1993; 85: 365-376
        • Ruta DA
        • Garratt AM
        • Leng M
        • Russell IT
        • MacDonald LM
        A new approach to the measurement of quality of life: the Patient-Generated Index.
        Med Care. 1994; 32: 1109-1126
        • Ferrans CE
        Development of a quality of life index for patients with cancer.
        Oncol Nurs Forum. 1990; 17: 15-19
        • Hickey A
        • O'Boyle CA
        • McGee HM
        • Joyce CRB
        The schedule for the evaluation of individual quality of life.
        in: Joyce CRB O'Boyle CA McGee HM Individual Quality of Life: Approaches to Conceptualisation and Assessment. Harwood Academic Publishers, Amsterdam, the Netherlands1999: 119-133
        • Joyce CRB
        • O'Boyle CA
        • McGee HM
        Individual Quality of Life: Approaches to Conceptualisation and Assessment. Harwood Academic Publishers, Amsterdam, the Netherlands1999
        • Von Neumann J
        • Morgenstern O
        Theory of Games and Economic Behavior. Princeton University Press, Princeton, NJ1944
        • Sprangers MA
        • Aaronson NK
        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. 1992; 45: 743-760
        • Hays RD
        • Vickrey BG
        • Hermann BP
        • et al.
        Agreement between self reports and proxy reports of quality of life in epilepsy patients.
        Qual Life Res. 1995; 4: 159-168
        • Osoba D
        Lessons learned from measuring health-related quality of life in oncology.
        J Clin Oncol. 1994; 12: 608-616
        • Matano T
        Quality of Life of Persons With Alzheimer's Disease [dissertation]. University of Illinois at Chicago Health Science Center, Chicago2000
        • Warnecke RB
        • Ferrans CE
        • Johnson TP
        • et al.
        Measuring quality of life in culturally diverse populations.
        J Natl Cancer Inst Monogr. 1996; 20: 29-38
        • Velikova G
        • Stark D
        • Selby P
        Quality of life instruments in oncology.
        Eur J Cancer. 1999; 35: 1571-1580
        • Karnofsky DA
        • Abelmann WH
        • Craver LF
        • Burchenal JH
        The use of the nitrogen mustards in the palliative treatment of carcinoma.
        Cancer. 1948; 1: 634-656
        • Ganz PA
        Quality of life and the patient with cancer: individual and policy implications.
        Cancer. 1994; 74: 1445-1452
        • Beusterien KM
        • Nissenson AR
        • Port FK
        • Kelly M
        • Steinwald B
        • Ware Jr, JE
        The effects of recombinant human erythropoietin on functional health and well-being in chronic dialysis patients.
        J Am Soc Nephrol. 1996; 7: 763-773
        • Giesler RB
        Assessing the quality of life in patients with cancer.
        Curr Probl Cancer. 2000; 24: 58-92
        • Justice AC
        • Aiken LH
        • Smith HL
        • Turner BJ
        The role of functional status in predicting inpatient mortality with AIDS: a comparison with current predictors.
        J Clin Epidemiol. 1996; 49: 193-201
        • Ganz PA
        • Lee JJ
        • Siau J
        Quality of life assessment: an independent prognostic variable for survival in lung cancer.
        Cancer. 1991; 67: 3131-3135
        • Tamburini M
        • Brunelli C
        • Rosso S
        • Ventafridda V
        Prognostic value of quality of life scores in terminal cancer patients.
        J Pain Symptom Manage. 1996; 11: 32-41
        • Kaplan RM
        • Bush JW
        Health-related quality of life measurement for evaluation research and policy analysis.
        Health Psychol. Winter 1982; 1: 61-80
        • Gold MR
        • Patrick DL
        • Torrance GW
        • et al.
        Identifying and valuing outcomes.
        in: Gold MR Siegel JE Russell LB Weinstein MC Cost-Effectiveness in Health and Medicine. Oxford University Press, New York, NY1996: 82-134