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Experience-Based Values: A Framework for Classifying Different Types of Experience in Health Valuation Research

  • Patricia Cubi-MollaEmail author
  • Koonal Shah
  • Kristina Burström
Leading Article

Abstract

Whether health values should be elicited from the perspective of patients or the general public is still an open debate. The overall aim of this paper is to increase knowledge on the role of experience in health preference-based valuation research. The objectives of this paper are threefold. First, we elaborate the idea of experience-based (EB) values under the informed value or knowledge viewpoint. We think the whole scope of knowledge about the health states involved in valuation exercises is not fully integrated in the previous literature. For instance, personal knowledge based on past experiences, contemplating the health state as a likely future condition, knowing someone who is currently experiencing the state, or just receiving detailed information about the health states; all these situations capture different nuances of health-related experience which are not explicitly referred to in valuation tasks. Second, we propose a framework where the extended factor of experience is detached from other factors interwoven into the valuation exercise. Third, we examine how experience is tackled in different value sets (EB or non-EB) identified via a literature review. We identified the following elements (and items) in a value set: health state (without description, described using a multi-attribute instrument, described using other method), reference person (the respondent; other person, similar/known/hypothetical), time frame (past, present, future), raters (public, representative/convenience; vested interest, patients/other) and experience (personal experience, past/present/future; vicarious experience, affective/non-affective; no experience). Forty-nine valuation exercises were extracted from 22 reviewed papers and classified following our suggested set of elements and items. The results show that the role of experience reported in health valuation-related papers is frequently disregarded or, at most, minimised to the item of personal experience (present)—linked to self-reported health.

Notes

Acknowledgements

We acknowledge the feedback received on previous drafts from Nancy Devlin, Mike Herdman, Aki Tsuchiya, Mimmi Åström and three referees. Feedback from participants at the PROMs conference (Sheffield, Oxford) and the EuroQol Plenary meeting is also acknowledged.

Author Contributions

PCM conceived and designed the study, with assistance from KS. PCM conducted the literature review. PCM led the data analysis and interpretation, with assistance from KS and KB. PCM led the drafting of the article, with assistance from KS. PCM, KS and KB all revised the article and approved the final version.

Compliance with Ethical Standards

Funding

The project is partially funded by the EuroQol Research Foundation (EQ project 2016460). The views expressed by the authors in this publication do not necessarily reflect the views of the EuroQol Group.

Conflict of interest

PCM and KS are employees of the Office of Health Economics, a registered charity, which receives funding from a variety of sources, including the Association of the British Pharmaceutical Industry. KB and KS are members of the EuroQol group, the developer of the EQ-5D instrument.

References

  1. 1.
    Dolan P, Kahneman D. Interpretations of utility and their implications for the valuation of health. Econ J. 2008;118(525):215–34.CrossRefGoogle Scholar
  2. 2.
    Ubel P, Lowenstein G, Jepson C. Whose quality of life? A commentary exploring discrepancies between health state evaluations of patients and the general public. Qual Life Res. 2003;12:599–607.CrossRefPubMedGoogle Scholar
  3. 3.
    De Wit GA, Busschbach JJ, De Charro FT. Sensitivity and perspective in the valuation of health status: whose values count? Health Econ. 2000;9(2):109–26.CrossRefPubMedGoogle Scholar
  4. 4.
    Menzel P, Dolan P, Richardson J, Olsen JA. The role of adaptation to disability and disease in health state valuation: a preliminary normative analysis. Soc Sci Med. 2002;55(12):2149–58.CrossRefPubMedGoogle Scholar
  5. 5.
    Versteegh M, Brouwer W. Patient and general public preferences for health states: a call to reconsider current guidelines. Soc Sci Med. 2016;165:66–74.CrossRefPubMedGoogle Scholar
  6. 6.
    Oldridge N, Furlong W, Perkins A, Feeny D, Torrance GW. Community or patient preferences for cost-effectiveness of cardiac rehabilitation: does it matter? Eur J Cardiovasc Prev Rehabil. 2008;15(5):608–15.CrossRefPubMedGoogle Scholar
  7. 7.
    Borkman T. Experiential knowledge: a new concept for the analysis of self-help groups. Soc Serv Rev. 1976;50(3):445–56.CrossRefGoogle Scholar
  8. 8.
    Abel EK, Browner CH. Selective compliance with biomedical authority and the uses of experiential knowledge. In: Lock M, Kaufert P, editors. Pragmatic women and body politics. Cambridge: Cambridge University Press; 1998.Google Scholar
  9. 9.
    Brazier J, Rowen D, Karimi M, Peasgood T, Tsuchiya A, Ratcliffe J. Experience-based utility and own health state valuation for a health state classification system: why and how to do it. Eur J Health Econ. 2017.  https://doi.org/10.1007/s10198-017-0931-5.
  10. 10.
    Dolan P, Olsen J, Menzel P, Richardson J. An inquiry into the different perspectives that can be used when eliciting preferences in health. Health Econ. 2003;12(7):545–51.CrossRefPubMedGoogle Scholar
  11. 11.
    Tsuchiya A, Watson V. Re-thinking ‘the different perspectives that can be used when eliciting preferences in health. Health Econ. 2017.  https://doi.org/10.1002/hec.3480.Google Scholar
  12. 12.
    Leidl R, Schweikert B, Hahmann H, Steinacker JM, Reitmeir P. Assessing quality of life in a clinical study on heart rehabilitation patients: how well do value sets based on given or experienced health states reflect patients’ valuations? Health Qual Life Outcomes. 2016;14(1):48.CrossRefPubMedPubMedCentralGoogle Scholar
  13. 13.
    Burström K, Sun S, Gerdtham UG, Henriksson M, Johannesson M, Levin LA, et al. Swedish experience-based value sets for EQ-5D health states. Qual Life Res. 2014;23(2):431–42.CrossRefPubMedGoogle Scholar
  14. 14.
    Tosh J, Brazier J, Evans P, Longworth L. A review of generic preference-based measures of health-related quality of life in visual disorders. Value Health. 2012;15(1):118–27.CrossRefPubMedPubMedCentralGoogle Scholar
  15. 15.
    Whitehead SJ, Ali S. Health outcomes in economic evaluation: the QALY and utilities. Br Med Bull. 2010;96(1):5–21.CrossRefPubMedGoogle Scholar
  16. 16.
    Brazier J, Akehurst R, Brennan A, Dolan P, Claxton K. Should patients have a greater role in valuing health states? Appl Health Econ Health Policy. 2005;4(4):201–8.CrossRefPubMedGoogle Scholar
  17. 17.
    Insinga RP, Fryback DG. Understanding differences between self-ratings and population ratings for health in the EuroQOL. Qual Life Res. 2003;12(6):611–9.CrossRefPubMedGoogle Scholar
  18. 18.
    Peeters Y, Stiggelbout AM. Health state valuations of patients and the general public analytically compared: a meta-analytical comparison of patient and population health state utilities. Value Health. 2010;13(2):306–9.CrossRefPubMedGoogle Scholar
  19. 19.
    Aronsson M, Husberg M, Kalkan A, Eckard N, Alwin J. Differences between hypothetical and experience-based value sets for EQ-5D used in Sweden: implications for decision makers. Scand J Public Health. 2015;43(8):848–54.CrossRefPubMedGoogle Scholar
  20. 20.
    Little MH, Reitmeir P, Peters A, Leidl R. The impact of differences between patient and general population EQ-5D-3L values on the mean tariff scores of different patient groups. Value Health. 2014;17(4):364–71.CrossRefPubMedGoogle Scholar
  21. 21.
    Mulhern B, Bansback N, Brazier J, Buckingham K, Cairns J, Dolan N, et al. Preparatory study for the revaluation of the EQ-5D tariff: methodology report. Health Technol Assess. 2014;18(12):1–191.CrossRefPubMedPubMedCentralGoogle Scholar
  22. 22.
    McNamee P. What difference does it make? The calculation of QALY gains from health profiles using patient and general population values. Health Policy. 2007;84(2):321–31.CrossRefPubMedGoogle Scholar
  23. 23.
    Maor Y, King M, Olmer L, Mozes B. A comparison of three measures: the time trade-off technique, global health-related quality of life and the SF-36 in dialysis patients. J Clin Epidemiol. 2001;54(6):565–70.CrossRefPubMedGoogle Scholar
  24. 24.
    Zethraeus N, Johannesson M. A comparison of patient and social tariff values derived from the time trade-off method. Health Econ. 1999;8(6):541–5.CrossRefPubMedGoogle Scholar
  25. 25.
    Robinson A, Dolan P, Williams A. Valuing health status using VAS and TTO: what lies behind the numbers? Soc Sci Med. 1997;45(8):1289–97.CrossRefPubMedGoogle Scholar
  26. 26.
    Dolan P. Developing methods that really do value the ‘Q’in the QALY. Health Econ Policy Law. 2008;3(01):69–77.PubMedGoogle Scholar
  27. 27.
    NICE. Guide to the methods of health technology appraisal London: NICE; 2013.Google Scholar
  28. 28.
    Burström K, Johannesson M, Diderichsen F. A comparison of individual and social time trade-off values for health states in the general population. Health Policy. 2006;76(3):359–70.CrossRefPubMedGoogle Scholar
  29. 29.
    Boardman F. Knowledge is Power? The role of experiential knowledge in genetically ‘risky’ reproductive decisions. Sociol Health Illn. 2014;36(1):137–50.CrossRefPubMedGoogle Scholar
  30. 30.
    McTaggart-Cowan H, Tsuchiya A, O’Cathain A, Brazier J. Understanding the effect of disease adaptation information on general population values for hypothetical health states. Soc Sci Med. 2011;72(11):1904–12.CrossRefPubMedGoogle Scholar
  31. 31.
    Boye KS, Matza LS, Feeny DH, Johnston JA, Bowman L, Jordan JB. Challenges to time trade-off utility assessment methods: when should you consider alternative approaches? Expert Rev Pharmacoecon Outcomes Res. 2014;14(3):437–50.CrossRefPubMedGoogle Scholar
  32. 32.
    Dolan P. Modelling valuations for health states: the effect of duration. Health Policy. 1996;38:189–203.CrossRefPubMedGoogle Scholar
  33. 33.
    Urdang L, editor. The Oxford thesaurus: an AZ dictionary of synonyms. BCA/Oxford University Press; Reprint edition 1993.Google Scholar
  34. 34.
    Bulme S. In search of experiential knowledge. Innov Eur J Soc Sci Res. 2017;30(1):91–103.CrossRefGoogle Scholar
  35. 35.
    Leidl R, Reitmeir P. An experience-based value set for the EQ-5D-5L in Germany. Value Health. 2017;20(8):1150–6.CrossRefPubMedGoogle Scholar
  36. 36.
    Leidl R, Reitmeir P. A value set for the EQ-5D based on experienced health states. Pharmacoeconomics. 2011;29(6):521–34.CrossRefPubMedGoogle Scholar
  37. 37.
    Sun S, Chen J, Kind P, Xu L, Zhang Y, Burström K. Experience-based VAS values for EQ-5D-3L health states in a national general population health survey in China. Qual Life Res. 2015;24(3):693–703.CrossRefPubMedGoogle Scholar
  38. 38.
    Boardman FK. Experience as knowledge: disability, distillation and (reprogenetic) decision-making. Soc Sci Med. 2017;191:186–93.CrossRefPubMedGoogle Scholar
  39. 39.
    Attema A, Versteegh M, Oppe M, Brouwer W, Stolk E. Lead time TTO: leading to better health state valuations? Health Econ. 2013;22(4):376–92.CrossRefPubMedGoogle Scholar
  40. 40.
    Badia X, Roset M, Herdman M, Kind P. A comparison of United Kingdom and Spanish general population time trade-off values for EQ-5D Health states. Med Decis Mak. 2001;21(1):7–16.CrossRefGoogle Scholar
  41. 41.
    Björk S, Norinder A. The weighting exercise for the Swedish version of the EuroQol. Health Econ. 1999;8(2):117–26.CrossRefPubMedGoogle Scholar
  42. 42.
    Brazier J, Roberts J, Deverill M. The estimation of a preference-based measure of health from the SF-36. J Health Econ. 2002;21(2):271–92.CrossRefPubMedGoogle Scholar
  43. 43.
    Dolan P. Thinking about it: thoughts about health and valuing QALYs. Health Econ. 2011;20(12):1407–16.CrossRefPubMedGoogle Scholar
  44. 44.
    Greiner W, Claes C, Busschbach JJV, Graf van der Schulenburg JM. Validating the EQ-5D with time trade-off for the German population. Eur J Health Econ. 2005;6(2):124–30.CrossRefPubMedGoogle Scholar
  45. 45.
    Hofman C, Makai P, Boter H, Buurman B, de Craen A, Rikkert G, et al. The influence of age on health valuations: the older olds prefer functional independence while the younger olds prefer less morbidity. Clin Interv Aging. 2015;10:1131–9.CrossRefPubMedPubMedCentralGoogle Scholar
  46. 46.
    Lamers LM, McDonnell J, Stalmeier PF, Krabbe PF, Busschbach JJ. The Dutch tariff: results and arguments for an effective design for national EQ-5D valuation studies. Health Econ. 2006;15(10):1121–32.CrossRefPubMedGoogle Scholar
  47. 47.
    Tongsiri S, Cairns J. Estimating population-based values for EQ-5D health states in Thailand. Value Health. 2011;14(8):1142–5.CrossRefPubMedGoogle Scholar
  48. 48.
    van Nooten FE, Koolman X, Brouwer WBF. The influence of subjective life expectancy on health state valuations using a 10 year TTO. Health Econ. 2009;18(5):549–58.CrossRefPubMedGoogle Scholar
  49. 49.
    Wittrup-Jensen KU, Lauridsen J, Gudex C, Pedersen KM. Generation of a Danish TTO value set for EQ-5D health states. Scand J Soc Med. 2009;37(5):459–66.Google Scholar
  50. 50.
    Zarate V, Kind P, Chuang LH. Hispanic valuation of the EQ-5D health states: a social value set for Latin Americans. Value Health. 2008;11(7):1170–7.CrossRefPubMedGoogle Scholar
  51. 51.
    Oppe M, Rand-Hendriksen K, Shah K, Ramos-Goñi JM, Luo N. EuroQol protocols for time trade-off valuation of health outcomes. Pharmacoeconomics. 2016;34(10):993–1004.CrossRefPubMedPubMedCentralGoogle Scholar
  52. 52.
    Kahneman D, Tversky A. Choices, values, and frames. Am Psychol. 1984;39(4):341–50.CrossRefGoogle Scholar
  53. 53.
    Oppe M, Devlin N, van Hout B, Krabbe PFM, de Charro F. A program of methodological research to arrive at the new international EQ-5D-5L valuation protocol. Value Health. 2014;17(4):445–53.CrossRefPubMedGoogle Scholar

Copyright information

© Springer International Publishing AG, part of Springer Nature 2018

Authors and Affiliations

  1. 1.Office of Health EconomicsLondonUK
  2. 2.Department of Learning, Informatics, Management and Ethics, Stockholm Centre for Healthcare Ethics, Health Outcomes and Economic Evaluation Research GroupKarolinska InstitutetStockholmSweden
  3. 3.Department of Public Health Sciences, Equity and Health Policy Research GroupKarolinska InstitutetStockholmSweden
  4. 4.Health Care ServicesStockholm County CouncilStockholmSweden

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