Skip to main content

Advertisement

Log in

Quality of life is a process not an outcome

  • Published:
Theoretical Medicine and Bioethics Aims and scope Submit manuscript

Abstract

Quality improvement mechanisms increasingly use outcome measures to evaluate health care providers. This move toward outcome measures is a radical departure from the traditional focus on process measures. More radical still is the proposal to shift from relatively simple and proximal measures of outcome, such as mortality, to complex outcomes, such as quality of life. While the practical, scientific, and ethical issues associated with the use of outcomes such as mortality and morbidity to compare health care providers have been well rehearsed, the specific concerns associated with the use of quality of life measures in quality of care research have received little attention. As with much research on quality of life there is a tendency to assume that the disadvantages are outweighed by the general virtue of “listening” to patients. In this paper we disagree with this assumption and argue that quality of life is a process, not an outcome.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

Notes

  1. There are other reasons to favor PROMs. As Nigel Hawkes wrote in the British Medical Journal, although mortality rates may be a more intuitve outcome, they can also be misleading [4]. For mortality statistics to be meaningful researchers need large sample sizes, and at least with regard to surgical interventions, few are common enough for mortality statistics to be meaningful.

  2. For a comparison of the differences between utilitarianism and the capability approach, see [11, 12].

  3. In 2006 the final NICE guidance did allow for the provision of these drugs in cases of “moderate” Alzheimer’s, but mild cases were still ineligible until 2010.

  4. Although PROMs researchers tend to see this lack as a problem specific to the social sciences, all forms of scientific measurement face the same problem [1921].

  5. The idea of “direct validation” is, perhaps, philosophically niave. As Bas van Fraassen and others have argued, “What counts as a measurement of x” and “What is x” cannot be answered independently of one another [19, 23]. This is in fact the heart of the coordination problem.

References

  1. Epstein, A.M. 1990. The oucomes movement—Will it get us where we want to go? New England Journal of Medicine 232(4): 266–270.

    Article  Google Scholar 

  2. Kassirer, J.P. 1993. The quality of care and measuring it. New England Journal of Medicine 329(17): 1263–1265.

    Article  Google Scholar 

  3. Jones III, N., S.L. Jones, and N.A. Miller. 2004. The medicare health outcomes survey program: Overview, context, and near-term prospects. Health and Quality of Life Outcomes 2: 33.

    Article  Google Scholar 

  4. Hawkes, N. 2008. How do we get the measure of patient care? British Medical Journal 336(7638): 249.

    Article  Google Scholar 

  5. Committee on Quality of Health Care in America, Institute of Medicine. 2001. Crossing the quality chasm: a new health system for the 21st century. Washington, DC: National Academy Press.

    Google Scholar 

  6. Darzi, Lord. 2008. High quality care for all: NHS next stage review, final report. London: The Stationary Office.

    Google Scholar 

  7. Center for Medicare and Medicaid Services. 2012. Health Outcomes Survey (HOS). http://www.cms.gov/Research-Statistics-Data-and-Systems/Research/HOS/index.html?redirect=/hos/. Accessed 20 April 2012.

  8. Devlin, N., and J. Appleby. 2010. Getting the most out of PROMs: Putting health outcomes at the heart of NHS decision-making. London: The King’s Fund.

    Google Scholar 

  9. Appleby, J., N. Devlin, and D. Parkin. 2007. NICE’s cost effectiveness threshold: How high should it be? British Medical Journal 335: 358–359.

    Article  Google Scholar 

  10. Harris, J. 1987. QALYfying the value of life. Journal of Medical Ethics 13: 117–123.

    Article  Google Scholar 

  11. Sen, A. 1999. Development as freedom. Oxford: Oxford University Press.

    Google Scholar 

  12. Nussbaum, M.C. 2006. Frontiers of justice: Disability, nationality, species membership. Harvard: Harvard University Press.

    Google Scholar 

  13. Brock, D. 1993. Quality of life measures in health care and medical ethics. In Quality of life, ed. M.C. Nussbaum and A. Sen, 95–132. Oxford: Oxford University Press.

    Chapter  Google Scholar 

  14. Lane, H. 1993. The mask of benevolence. New York: Vintage Books.

    Google Scholar 

  15. McClimans, L. 2010. Towards self-determination in quality of life research. Medicine, Health Care and Philosophy 13: 67–76.

    Article  Google Scholar 

  16. Amundson, R. 2005. Disability, ideology, and quality of life: A bias in biomedical ethics. In Quality of life and human difference genetic testing, health care and disability, ed. D. Wasserman, J. Bickenbach, and R. Wachbroit, 101–124. New York: Cambridge University Press.

    Chapter  Google Scholar 

  17. Harris, J. 2005. It’s not NICE to discriminate. Journal of Medical Ethics 31: 373–375.

    Article  Google Scholar 

  18. Lee, C. 2002. Coclear implant court in grand rapids. E-Michigan deaf and hard of hearing people. http://ww.michdhh.org/news/200209.html. Accessed 8 May 2012.

  19. Van Fraassen, B. 2008. Scientific representation. Oxford: Oxford University Press.

    Book  Google Scholar 

  20. Chang, H. 2004. Inventing temperature. Oxford: Oxford University Press.

    Book  Google Scholar 

  21. Tal, E. 2011. How accurate is the standard second? Philosophy of Science 78: 1082–1096.

    Article  Google Scholar 

  22. Streiner, D.L., and G.R. Norman. 2003. Health measurement scales: A practical guide to their development and use, 3rd ed. Oxford: Oxford University Press.

    Google Scholar 

  23. Tal, E. 2012. Systematic error and the problem of quantity individuation. Philosophy of Science (manuscript under review).

  24. Hunt, S.M. 1997. The problem of quality of life. Quality of Life Research 6: 205–212.

    Google Scholar 

  25. Hobart, J.C., S.J. Cano, J.P. Zajicek, and A.J. Thompson. 2007. Rating scales as outcome measures in clinical trials in neurology: Problems, solutions and recommendations. Lancet Neurology 6: 1094–1105.

    Article  Google Scholar 

  26. McClimans, L. 2010. A theoretical framework for patient-reported outcome measures. Theoretical Medicine and Bioethics 31: 225–240.

    Article  Google Scholar 

  27. US Food and Drug Administration. 2009. Guidance for industry on patient-reported outcome measures: Use in medicinal product development to support labeling claims. Federal Register 74: 1–43.

    Google Scholar 

  28. Rotherman, M., L. Burke, P. Erickson, N.K. Leidy, D.L. Patrick, and C.D. Petrie. 2009. Use of existing patient-reported outcome (PRO) instruments and their modification: the ISPOR good research practices for evaluating and documenting content validity for the use of existing instruments and their modification. PRO task force report. Value in Health 12(8): 1075–1083.

    Article  Google Scholar 

  29. Taylor, C. 1985. What is human agency? In human agency and language: Philosophical papers I, 15–44. Cambridge: Cambridge University Press.

    Book  Google Scholar 

  30. Mallinson, S. 2002. Listening to respondents: A qualitative assessment of the short-form 36 health status questionnaire. Social Science and Medicine 54(1): 11–21.

    Article  Google Scholar 

  31. Westerman, M.J., T. Hak, M.A. Sprangers, H.J. Groen, G. van der Wal, and A.M. The. 2008. Listen to their answers! Response behaviour in the measurement of physical and role functioning. Quality of Life Research 17(4): 549–558.

    Article  Google Scholar 

  32. Schwartz, C.E., and B.D. Rapkin. 2004. Reconsidering the psychometrics of quality of life assessment in light of response shift and appraisal. Health and Quality of Life Outcomes 2: 14.

    Article  Google Scholar 

  33. Valderas, J.M., A. Kotzeva, M. Espallargues, et al. 2008. The impact of measuring patient-reported outcomes in clinical practice: a systematic review of the literature. Quality of Life Research 17: 179–193.

    Article  Google Scholar 

  34. Lilford, R., M.A. Mohammed, D. Spiegelhalter, and R. Thomson. 2004. Use and misuse of process and outcome data in managing performance of acute medical care: Avoiding institutional stigma. Lancet 363: 1147–1154.

    Article  Google Scholar 

  35. Lyratzopoulos, G., M.N. Elliott, J.M. Barbiere, L. Staetsky, C.A. Paddison, J. Campbell, and M. Roland. 2011. How can health care organizations be reliably compared? Lessons from a national survey of patient experience. Medical Care 49: 724–733.

    Article  Google Scholar 

  36. Jeevan, R., D. Cromwell, J.P. Browne, et al. 2011. Fourth annual report of the national mastectomy and breast reconstruction audit. London: Information Centre for Health and Social Care.

    Google Scholar 

  37. Selby, J.V., J.A. Schmittdiel, J. Leem, et al. 2010. Meaningful variation in performance: What does variation in quality tell us about improving quality? Medical Care 48: 133–139.

    Article  Google Scholar 

  38. Gawande, A. 2009. The checklist manifesto: How to get things right. New York: Picador.

    Google Scholar 

  39. Buchanan, A., and D. Brock. 1989. Deciding for others. Cambridge: Cambridge University Press.

    Google Scholar 

  40. Curren, R.R. 1995. Coercion and the ethics of grading and testing. Educational Theory 45: 425–441.

    Article  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Leah McClimans.

Rights and permissions

Reprints and permissions

About this article

Cite this article

McClimans, L., Browne, J.P. Quality of life is a process not an outcome. Theor Med Bioeth 33, 279–292 (2012). https://doi.org/10.1007/s11017-012-9227-z

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11017-012-9227-z

Keywords

Navigation