Abstract
There is often a discrepancy between quality of life estimates from patients and the general public. These discrepancies are of concern to the disability community, who worry that the public does not understand how valuable life can be for people with disabilities; policy planners, who must decide whose quality of life estimates to use in economic analysis; and practitioners and patients facing difficult medical decisions, who may have to worry that people have difficulty imagining unfamiliar health states. We outline several factors that may contribute to these discrepancies. Discrepancies might occur because patients and the public interpret health state descriptions differently – for example, making different assumptions about the recency of onset of the health state, or about the presence of comorbidities. Discrepancies might also arise if patients adapt to illness and the public does not predict this adaptation; because of response shift in how people use quality of life scales; because of a focusing illusion whereby people forget to consider obvious aspects of unfamiliar health states; because of contrast effects, whereby negative life events make people less bothered by less severe negative life events; and because of different vantage points, with patients viewing their illness in terms of the benefits that would result from regaining health, while the public views the illness in terms of the costs associated with losing good health. Decisions about whose values to measure for the purposes of economic analyses, and how to measure discrepancies, should take these potential contributing factors into account.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
References
Ubel PA, Loewenstein G, Hershey J, et al. Do nonpatients underestimate the quality of life associated with chronic health states because of a focusing illusion? Med Decis Making 2001; 21(3): 190–199.
Froberg DG, Kane RL. Methodology for measuring health-state preferences III. Population and context effects. J Clin Epidemiol 1989; 42(6): 585–592.
Kane RL, Bell RM, Riegler SZ. Value preferences for nursing home outcomes. Gerontologist 1986; 26: 303–308.
Nord, E. Methods for quality adjustment of life years. Soc Sci Med 1992; 34(5): 559–569.
Hall J, Gerard K, Salkeld G, Richardson J. A cost utility analysis of mammography screening in Australia. Soc Sci Med 1992; 34(9): 993–1004.
Tsevat J, Cook EF, Green M, et al. Health values for the seriously ill. Ann Int Med 1995; 122: 514–520.
Tsevat J, Dawson N, Wu A, et al. Health values of hospitalized patients 80 years or older. JAMA 1998; 279(5): 371–375.
Ashby J, O'Hanlon M, Buxton MJ. The time trade-off technique: How do the valuations of breast cancer patients compare to those of other groups? Qual Life Res 1994; 3: 257–265.
Sloan F, Viscusi WK, Chesson H, et al. Alternative approaches to valuing intangible health losses: The evidence for multiple sclerosis. J Health Econom 1998; 17: 475–497.
Hurst NP, Jobanputra P, Hunter M, et al. Validity of EuroQol-a generic health status instrument-in patients with rheumatoid arthritis. Brit J Rheumatol 1994; 33: 655–662.
Polsky D, Willke RJ, Scott K, et al. A comparison of scoring weight for the euroqol derived from patients and the general public. Health Econom 2001; 10: 27–37.
Sackett DL, Torrance GW. The utility of different health states as perceived by the general public. J Chronic Dis 1978; 31: 697–704.
Boyd NF, Sutherland HJ, Karen DLT, Heasman Z, Cummings BJ. Whose utilities for decision analysis? Med Decis Making 1990; 10(1): 58–67.
Brickman P, Coates D, Janoff-Bulman R. Lottery winners and accident victims: Is happiness relative? J Pers Soc Psychol 1978; 36: 917–927.
Hadorn DC. The problem of discrimination in health care priority setting. JAMA 1992; 268(11): 1454–1459.
Nord E, Pinto JL, Richardson J, et al. Incorporating societal concerns for fairness in numerical valuations of health programs. Health Econom 1999; 8: 25–39.
Gold MR, Siegel J, Russell LB, Weinstein M (eds). Cost-Effectiveness in Health and Medicine. New York: Oxford University Press, 1996.
Ubel PA, Loewenstein G. The role of decision analysis in informed consent: Choosing between intuition and systematicity. Soc Sci Med 1997; 44(5): 647–656.
Schkade DA, Kahneman D. Does living in California make people happy? A focusing illusion in judgments of life satisfaction. Psychol Sci 1998; 9: 340–346.
Wilson TD, Wheatley T, Meyers JM, et al. Focalism: A source of durability bias in affective forecasting. J Pers Soc Psychol 2000; 78(5): 821–836.
Schwartz CE, Sprangers MAG. Introduction to symposium on the challenge of response shift in social science and medicine. Soc Sci Med 1999; 48: 1505–1507.
Schwartz CE, Sprangers MAG. Methodological approaches for assessing response shift in longitudinal health-related quality-of-life research. Soc Sci Med 1999; 48: 1531–1548.
Sprangers M, Schwartz C. Integrating response shift into health-related quality of life research: A theoretical model. Soc Sci Med 1999; 48(11): 1507–1515.
Gibbons FX. Social comparison as mediator of response shift. Soc Sci Med 1999; 48(11): 1517–1530.
Wilson IB. Clinical understanding and clinical implications of response shift. Soc Sci Med 1999; 48: 1577–88.
Lenert LA, Treadwell JR, Schwartz CE. Associations between health status and utilities: Implications for policy. Med Care 1999; 37(5): 479–489.
Kahneman D, Tversky A. Prospect theory: An analysis of decision under risk. Econometrica 1979; 47(2): 263–291.
Kahneman D, Fredrickson BL, Schreiber CA, Redelmeier DA. When more pain is preferred to less: Adding a better end. Psychol Sci 1993; 4(6): 401–405.
Fredrickson BL, Kahneman D. Duration neglect in retrospective evaluations of affective episodes. J Pers Soc Psychol 1993; 65(1): 44–55.
Barrett LF. The relationship among momentary emotion experiences, personality, descriptions, and retrospective ratings of emotion. Pers Soc Psychol Bull 1997; 23(10): 1100–1110.
Shiffman S, Stone AA. Ecological momentary assessment: A new tool for behavior medicine research. In: Krants DS (ed.), Technology and Methods in Behavioral Medicine, Mahwah, NJ: Lawrence Erlbaum Association, 1998; 117–131.
Frederick S, Loewenstein G. Hedonic Adaptation. In: Schwarz N (ed.), Well-Being: The Foundations of Hedonic Psychology, New York: Russell Sage Foundation Press, 1999.
Diener E, Suh EM, Lucas RE, Smith HL. Subjective well-being: Three decades of progress. Psychol Bull 1999; 125(2): 276–302.
Loewenstein G, Frederick S. Predicting Reactions to Environmental Change. In: Wade-Benzoni K (ed.), Environment, Ethics, and Behavior, San Francisco: New Lexington Press, 1997.
Tversky A, Griffin D. Endowment and contrast in judgments of wellbeing. In: Hogarth RM (ed.), Research on Judgment and Decision Making: Currents, Connections, and Controversies, Cambridge: Cambridge University Press, 1997; 411–428.
Dar R, Ariely B, Frenk H. The effect of past injury on pain threshold and tolerance. Pain 1995; 60: 189–193.
Kahneman D, Objective Happiness. In: Kahneman D, Diener E and Schwarz N (eds.), Well-Being: The Foundations of Hedonic Psychology, New York: Russell Sage Foundation, 1999; 3–19.
Taylor SE, Lobel M. Social comparison activity under threat: Downward evaluation and upward contacts. Psychol Rev 1989; 96(4): 569–575.
Schwarz N, Strack F. Evaluating one's life: A judgement model of subjective well-being. In: Schwarz N (ed.), Subjective well-being. Oxford: Pergamon Press, 1991; 27–47.
Ubel PA, Richardson J, Menzel P. Societal value, the person trade-off, and the dilemma of whose values to measure for cost-effectiveness analysis. Health Econom 2000; 9: 127–136.
Ubel PA, Jepson C, Baron J. The inclusion of patient testimonials in decision aids: Effects on treatment choices. Med Decis Making 2001; 21(1): 60–68.
Author information
Authors and Affiliations
Rights and permissions
About this article
Cite this article
Ubel, P.A., Loewenstein, G. & Jepson, C. Whose quality of life? A commentary exploring discrepancies between health state evaluations of patients and the general public. Qual Life Res 12, 599–607 (2003). https://doi.org/10.1023/A:1025119931010
Issue Date:
DOI: https://doi.org/10.1023/A:1025119931010