Quality of Life Research

, Volume 19, Issue 3, pp 371–379 | Cite as

Assessing the use of health-related quality of life measures in the routine clinical care of lung-transplant patients

  • Maria-Jose SantanaEmail author
  • David Feeny
  • Jeffrey A. Johnson
  • Finlay A. McAlister
  • Daniel Kim
  • Justin Weinkauf
  • Dale C. Lien



This randomized controlled clinical trial examined the usefulness of including an assessment of health-related quality of life (HRQL) in the routine clinical care of lung-transplant patients. We hypothesized that the inclusion of HRQL in routine clinical care would improve patient–clinician communication, affect clinical management, and improve patients’ HRQL.


At the outpatient clinic, University of Alberta Hospital, patients were randomly assigned to intervention (completion of Health Utilities Index Mark 2 (HUI2) and Mark 3 (HUI3) on touch-screen computer with feedback to clinicians) and control group (completion of HUI2 and HUI3 on touch-screen computer without feedback). Feedback involved a graphical representation included in patients’ chart. All clinical encounters were audio-taped. Changes in clinical management (medication changes, number of referrals and test ordered) were summed to produce an overall management composite. At the end of every visit, patients completed the EQ-5D.


Two hundred and thirteen patients were randomized (108 to intervention and 105 to control groups). There were statistically significant differences between the groups in mean number of issues discussed per encounter (P = 0.003; Cohen’s d = 0.03) and mean management composite score (P = 0.001; Cohen’s d = 0.41). EQ-5D index was not statistically significant different between the groups (P = 0.48).


We detected very small effects on patient–clinician communication and small effects on patient management, without detecting improvement in patient outcome.


Quality of life Health-related quality of life Communication Clinical management 



The authors thank the patients and the staff in the lung-transplant program at the University of Alberta Hospital for their support in this project. The authors also acknowledge the constructive comments provided by two anonymous reviewers and by the editor, Ron D. Hays. The authors are grateful to the Institute of Health Economics (IHE), Edmonton, for providing the funding for the study. IHE has neither reviewed nor approved of the manuscript. The research was also supported by an unrestricted educational grant from Roche. Roche has neither reviewed nor approved of the manuscript.

Conflict of interest

It should be noted that David Feeny has a proprietary interest in Health Utilities Incorporated, Dundas, Ontario, Canada. HUInc. distributes copyrighted Health Utilities Index (HUI) materials and provides methodological advice on the use of HUI.


  1. 1.
    Wasson, J., Hays, R., Rubenstein, L., Nelson, E., Leaning, J., Johnson, D., et al. (1992). The short-term effect of patient health status assessment in a health maintenance organization. Quality of Life Research, 1, 99–106.CrossRefPubMedGoogle Scholar
  2. 2.
    Wasson, J., Keller, A., Rubenstein, L., Hays, R., et al. (1992). Benefits and obstacles of health status assessment in ambulatory settings: the clinician's point of view. Medical Care, 30(5), MS42–MS49.CrossRefPubMedGoogle Scholar
  3. 3.
    Taenzer, P., Bultz, B. D., Carlson, L. E., Speca, M., DeGagne, T., Olson, K., et al. (2000). Impact of computerized quality of life screening on physician behaviour and patient satisfaction in lung cancer outpatients. Psychooncology, 9(3), 203–213.CrossRefPubMedGoogle Scholar
  4. 4.
    Espallargues, M., Valderas, J. M., & Alonso, J. (2000). Provision of feedback on perceived health status to health care professionals: A systematic review of its impact. Medical Care, 38, 175–186.CrossRefPubMedGoogle Scholar
  5. 5.
    Detmar, S. B., Muller, M. J., Schornagel, J. H., Wever, L. D., & Aaronson, N. K. (2002). Health-related quality-of-life assessments and patient-physician communication: A randomized controlled trial. JAMA, 288(23), 3027–3034.CrossRefPubMedGoogle Scholar
  6. 6.
    Velikova, G., Booth, L., Smith, A., Brown, P., Lynch, P., Brown, J. M., et al. (2004). Measuring quality of life in routine oncology practice improves communication and patient well-being: A randomized controlled trial. Journal of Clinical Oncology, 22(4), 714–724.CrossRefPubMedGoogle Scholar
  7. 7.
    Rosenbloom, S. K., Victorson, D. E., Hanh, E. A., Peterman, A. H., & Cella, D. (2007). Assessment is not enough: A randomized controlled trial of the effects of HRQL assessment on quality of life and satisfaction in oncology clinical practice. Psychooncology, 16, 1069–1079.CrossRefPubMedGoogle Scholar
  8. 8.
    Gutteling, J. J., Darlington, A. S., Janssen, H. L., Duivenvoorden, H. J., Busschbach, J. J., & de Man, R. A. (2008). Effectiveness of health-related quality of life measurement in clinical practice: A prospective, randomized controlled trial in patients with chronic liver disease and their physicians. Quality Life Research, 17, 195–205.CrossRefGoogle Scholar
  9. 9.
    de Wit, M., Delemarre-van de Waal, H. A., Bokma, J. A., Haasnoot, K., Houdijk, M., Gemke, R. J., et al. (2008). Monitoring and discussing health related quality of life in adolescent with type 1 diabetes improve psychosocial well-being. Diabetes Care, 31(8), 1521–1526.CrossRefPubMedGoogle Scholar
  10. 10.
    Hilarius, D. L., Kloeg, P. H., Gundy, C. M., & Aaroson, N. K. (2008). Use of health-related quality of life assessments in daily clinical oncology nursing practice: A community hospital-based intervention study. Cancer, 113(3), 628–637.CrossRefPubMedGoogle Scholar
  11. 11.
    Santana M. J. Feeny D. (2007). The framework. International Society for Quality of Life Research Meeting Abstracts.
  12. 12.
    Feldman-Stewart, D., Brundage, M., & Tishelman, C. (2005). A conceptual framework for patient-professional communication: An application to the cancer context. Psycho-Oncology, 14, 801–809.CrossRefPubMedGoogle Scholar
  13. 13.
    Feldman-Stewart, D., & Brundage, M. D. (2009). A conceptual framework for patient-provider communication: A tool in the PRO research tool box. Quality Life Research, 18, 109–114.CrossRefGoogle Scholar
  14. 14.
    Greenhalgh, J., Long, A. F., & Flynn, R. (2005). The use of patient reported outcome measures in routine clinical practice: Lack of impact or lack of theory? Social Science and Medicine, 60, 833–843.CrossRefPubMedGoogle Scholar
  15. 15.
    Torrance, G. W., Feeny, D. H., Furlong, W. J., Barr, R. D., Zhang, Y., & Wang, Q. (1996). Multiattribute utility function for a comprehensive health status classification system. Health Utilities Index Mark 2. Medical Care, 34(7), 702–722.CrossRefPubMedGoogle Scholar
  16. 16.
    Feeny, D., Furlong, W., Torrance, G. W., Goldsmith, C. H., Zhu, Z., DePauw, S., et al. (2002). Multiattribute and single-attribute utility functions for the Health Utilities Index Mark 3 system. Medical Care, 40(2), 113–128.CrossRefPubMedGoogle Scholar
  17. 17.
    Zigmond, A. S., & Snaith, R. P. (1983). The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica, 67(6), 361–370.CrossRefPubMedGoogle Scholar
  18. 18.
    Morisky, D. E., Green, L. W., & Levine, D. M. (1986). Concurrent and predictive validity of a self-reported measure of medication adherence. Medical Care, 24(1), 67–74.CrossRefPubMedGoogle Scholar
  19. 19.
    Godin, G., & Shephard, R. J. (1985). A simple method to assess exercise behaviour in the community. Canadian Journal of Applied Sport Sciences, 10(3), 141–146.Google Scholar
  20. 20.
    Consumer Assessment of Healthcare Providers and Systems Clinician and Group Survey, CAHPS. Available from: . Accessed 8 Jan 2005.
  21. 21.
    Kind, P. (1996). The Euroqol instrument: An index of health-related quality of life. In Bert Spilker (Ed.), Quality of life and pharmacoeconomics in clinical trials (2nd ed., pp. 191–201). Philadelphia: Lippincott-Raven Press. Chap. 22.Google Scholar
  22. 22.
    Brazier, J. E., & Roberts, J. (2004). Estimating a preference-based index from the SF-12. Medical Care, 42(9), 851–859.CrossRefPubMedGoogle Scholar
  23. 23.
    Feeny, D., Furlong, W., Saigal, S., & Sun, J. (2004). Comparing directly measured standard gamble scores HUI2 and HUI3 utility scores: Group- and individual-level comparisons. Social Science & Medicine, 58, 799–809.CrossRefGoogle Scholar
  24. 24.
    Kaplan, R. M., Bush, J. W., & Berry, C. C. (1976). Health status: Types of validity and the index of well-being. Health Services Research, 11, 478–506.PubMedGoogle Scholar
  25. 25.
    Feng, Y., Bernier, J., McIntosh, C., Orpana, H. (2009). Validation of disability categories derived from Health Utilities Index Mark 3 scores. Component of Statistics Canada Catalogue no. 82-003-X. Health Reports.Google Scholar
  26. 26.
    Santana, M. J., & Feeny, D. (2009). Using health utilities index in routine clinical care: Process, feasibility, and acceptability. The Patient: Patient-Centered Outcomes Research, 2(3), 159–167.CrossRefGoogle Scholar
  27. 27.
    Santana, M. J., & Feeny, D. (2006). Reliability of a patient-clinician communication evaluation form. Patient reported outcome newsletter, 36, 37–38.Google Scholar
  28. 28.
    Shaw, J., Johnson, J. A., & Coons, S. J. (2005). US valuation of the EQ-5D health states: Development and testing of the D1 valuation model. Medical Care, 43(3), 203–220.CrossRefPubMedGoogle Scholar
  29. 29.
    Anyanwu, A. C., McGuire, A., Rogers, C. A., & Murday, A. J. (2001). Assessment of quality of life in lung transplantation using a simple generic tool. Thorax, 56, 218–222.CrossRefPubMedGoogle Scholar
  30. 30.
    Cohen, J. (1988). Statistical power analysis for the behavioural sciences (2nd ed.). Hillsdale, NJ: Laurence Erlbaum.Google Scholar
  31. 31.
    SPSS version 15.00. SPSS Inc. Chicago, IL.
  32. 32.
    Nicklasson M. & Bergman B. (2008). The impact of quality of life assessment on psychosocial attention and satisfaction with care in patients with chest malignancies: A randomized study. International Society for Quality of Life Research Meeting Abstracts,, Quality of Life Research, A-16, Abstract #1628.
  33. 33.
    Santana M. J., Feeny D. (2007). Patient and provider perceptions about the inclusion of health-related quality of life (HRQL) measures in routine clinical care. International Society for Quality of Life Research Meeting Abstracts,, Quality Life Research, A-65, Abstract #1270.
  34. 34.
    Ware, J. E., & Sherbourne, C. (1992). The MOS 36-item short form health survey (SF-36). Medical Care, 30(6), 473–483.CrossRefPubMedGoogle Scholar

Copyright information

© Springer Science+Business Media B.V. 2010

Authors and Affiliations

  • Maria-Jose Santana
    • 1
    Email author
  • David Feeny
    • 1
    • 2
  • Jeffrey A. Johnson
    • 1
  • Finlay A. McAlister
    • 1
  • Daniel Kim
    • 1
  • Justin Weinkauf
    • 1
  • Dale C. Lien
    • 1
  1. 1.University of Alberta HospitalEdmontonCanada
  2. 2.Kaiser Permanente NorthwestPortlandUSA

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