Skip to main content

Advertisement

SpringerLink
Log in

Discrepancies between proxy estimates and patient reported, health related, quality of life: minding the gap between patient and clinician perceptions in heart failure

  • Published:
Quality of Life Research Aims and scope Submit manuscript

Abstract

Purpose

Health related quality of life (HRQoL) is rarely routinely measured in the clinical setting. In the absence of patient reported data, clinicians rely on proxy and informal estimates to support clinical decisions. This study compares clinician estimates (proxy) with patient reported HRQoL in patients with advanced heart failure and examines factors influencing discrepancies.

Methods

Seventy-five patients with heart failure, (22 females, 53 males) completed the EQ-5D-5L questionnaire. Thirty-nine clinicians (11 medical, 23 nursing, 5 allied health) completed the proxy version (V1) producing 194 dyads. Correlation was assessed using Spearman’s rank tests, systematic bias was examined with Bland–Altman analyses. Inter-rater agreement at the domain level, was investigated using linear weighted Kappa statistics while factors influencing the IRG were explored using independent student t-tests, analysis of variance and regression.

Results

There was a moderate positive correlation between clinician HRQoL estimates and patient reported utility (r = 0.38; p < .0005). Mean clinician estimates were higher than patient reported utility (0.60 vs 0.54; p = 0.008), with significant underestimation of reported problems apparent in three of the five EQ-5D-5L domains. Patient sex (female), depressed mood and frailty were all associated with an increased inter-rater gap.

Conclusion

Clinicians in this sample overestimated HRQoL. Factors affecting the inter-rater gap, including sex and depression, support formal HRQoL screening to enhance clinical conversations and decision making. The discrepancy also supports regulatory restriction on the use of expert opinion in the development of QALYs in health economic analysis.

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

Access this article

Log in via an institution

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

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2

Similar content being viewed by others

References

  1. Ishaque, S., Karnon, J., Chen, G., Nair, R., & Salter, A. B. (2019). A systematic review of randomised controlled trials evaluating the use of patient-reported outcome measures (PROMs). Quality of Life Research, 28(3), 567–592.

    Article  CAS  PubMed  Google Scholar 

  2. Cavanagh, C. E. (2019). Quality of life in heart failure: Screening alone is insufficient. European Heart Journal - Quality of Care and Clinical Outcomes, 5(3), 191–192.

    Article  PubMed  Google Scholar 

  3. Rand, S., & Caiels, J. (2020). Using proxies to assess quality of life: A review of the issues and challenges. Discussion Paper. University of Kent; 2015. Retrieved May 22, 2020, from https://www.pssru.ac.uk/pub/4980.pdf.

  4. Arora, J., & Tavella, R. (2020). Implementing ICHOM’s standard sets of outcomes: Coronary artery disease in the coronary angiogram database of South Australia (CADOSA). International Consortium for Health Outcomes Measurement (ICHOM), 2017. Retrieved May 22, 2020 from https://www.ichom.org/wp-content/uploads/2013/10/CADOSA-Case-Study-Draft-vF_Jan17.pdf.

  5. Foster, A., Croot, L., Brazier, J., Harris, J., & O’Cathain, A. (2018). The facilitators and barriers to implementing patient reported outcome measures in organisations delivering health related services: A systematic review of reviews. Journal of Patient-Reported Outcomes, 2, 46.

    Article  PubMed  PubMed Central  Google Scholar 

  6. Philpot, L. M., Barnes, S. A., Brown, R. M., Austin, J. A., James, C. S., Stanford, R. H., et al. (2018). Barriers and benefits to the use of patient-reported outcome measures in routine clinical care: A qualitative study. American Journal of Medical Quality, 33(4), 359–364.

    Article  PubMed  Google Scholar 

  7. Nelson, E. C., Eftimovska, E., Lind, C., Hager, A., Wasson, J. H., & Lindblad, S. (2015). Patient reported outcome measures in practice. BMJ, 350, g7818.

    Article  PubMed  Google Scholar 

  8. Kim, D. H. (2018). Incorporating quality of life prediction in shared decision making about transcatheter aortic valve replacement. Circulation: Cardiovascular Quality and Outcomes, 11(10), e005097.

    Google Scholar 

  9. Pickard, A. S., & Knight, S. J. (2005). Proxy evaluation of health-related quality of life: A conceptual framework for understanding multiple proxy perspectives. Medical Care, 43(5), 493–499.

    Article  PubMed  PubMed Central  Google Scholar 

  10. Robertson, S., Cooper, C., Hoe, J., Hamilton, O., Stringer, A., & Livingston, G. (2017). Proxy rated quality of life of care home residents with dementia: A systematic review. International Psychogeriatrics, 29(4), 569–581.

    Article  PubMed  PubMed Central  Google Scholar 

  11. Coucill, W. B., Bentham, S., Buckley, P., & Laight, A. (2001). EQ-5D in patients with dementia. An investigation of interrater agreement. Medical Care, 39(8), 760–777.

    Article  CAS  PubMed  Google Scholar 

  12. Devine, A., Taylor, S. J., Spencer, A., Diaz-Ordaz, K., Eldridge, S., & Underwood, M. (2014). The agreement between proxy and self-completed EQ-5D for care home residents was better for index scores than individual domains. Journal of Clinical Epidemiology, 67(9), 1035–1043.

    Article  PubMed  PubMed Central  Google Scholar 

  13. Schmidt, S., Power, M., Green, A., Lucas-Carrasco, R., Eser, E., Dragomirecka, E., et al. (2010). Self and proxy rating of quality of life in adults with intellectual disabilities: Results from the DISQOL study. Research in Developmental Disabilities, 31(5), 1015–1026.

    Article  PubMed  Google Scholar 

  14. Simoes, C., & Santos, S. (2016). The quality of life perceptions of people with intellectual disability and their proxies. Journal of Intellectual & Developmental Disability, 41(4), 311–323.

    Article  Google Scholar 

  15. Roydhouse, J. K., Gutman, R., Keating, N. L., Mor, V., & Wilson, I. B. (2018). Proxy and patient reports of health-related quality of life in a national cancer survey. Health and Quality of Life Outcomes, 16(1), 6.

    Article  PubMed  PubMed Central  Google Scholar 

  16. Kutner, J. S., Bryant, L. L., Beaty, B. L., & Fairclough, D. L. (2006). Symptom distress and quality-of-life assessment at the end of life: The role of proxy response. Journal of Pain and Symptom Management, 32(4), 300–310.

    Article  PubMed  Google Scholar 

  17. Lv, Essen. (2009). Proxy ratings of patient quality of life factors related to patient–proxy agreement. Acta Oncologica, 43(3), 229–234.

    Google Scholar 

  18. Ponikowski, P., Voors, A. A., Anker, S. D., Bueno, H., Cleland, J. G. F., Coats, A. J. S., et al. (2016). 2016 ESC Guidelines for the diagnosis and treatment of acute and chronic heart failure. European Heart Journal, 37(27), 2129–2200.

    Article  PubMed  Google Scholar 

  19. Vitale, C., Spoletini, I., & Rosano, G. M. (2018). Frailty in heart failure: Implications for management. Cardiac Failure Review, 4(2), 104–106.

    Article  PubMed  PubMed Central  Google Scholar 

  20. Thombs, B. D., De Jonge, P., Coyne, J. C., Whooley, M. A., Frasure-Smith, N., Mitchell, A. J., et al. (2008). Depression screening and patient outcomes in cardiovascular care. JAMA, 300(18), 2161–2171.

    Article  CAS  PubMed  Google Scholar 

  21. Hoekstra, T., Jaarsma, T., van Veldhuisen, D. J., Hillege, H. L., Sanderman, R., & Lesman-Leegte, I. (2013). Quality of life and survival in patients with heart failure. European Journal of Heart Failure, 15(1), 94–102.

    Article  PubMed  Google Scholar 

  22. Quinn, C., Dunbar, S. B., & Higgins, M. (2010). Heart failure symptom assessment and management: Can caregivers serve as proxy? Journal of Cardiovascular Nursing, 25(2), 142–148.

    Article  Google Scholar 

  23. Heo, S., Lennie, T. A., Okoli, C., & Moser, D. K. (2009). Quality of life in patients with heart failure: Ask the patients. Heart and Lung, 38(2), 100–108.

    Article  PubMed  Google Scholar 

  24. Haas, M., & Gonzalez, T. (2014). How oncology studies obtain QALY weights: A literature review. Cancer Research Economics Support Team. Retrieved May 22, 2020, from https://www.uts.edu.au/sites/default/files/2019-04/crest-factsheet-qaly-weights.pdf.

  25. Devlin, N. J., Shah, K. K., Feng, Y., Mulhern, B., & van Hout, B. (2018). Valuing health-related quality of life: An EQ-5D-5L value set for England. Health Economics, 27(1), 7–22.

    Article  PubMed  Google Scholar 

  26. Payakachat, N., Ali, M. M., & Tilford, J. M. (2015). Can The EQ-5D detect meaningful change? A systematic review. Pharmacoeconomics, 33(11), 1137–1154.

    Article  PubMed  PubMed Central  Google Scholar 

  27. Dyer, M. T. D., & Goldsmith, K. A. (2010). A review of health utilities using the EQ-5D in studies of cardiovascular disease. Health and Quality of Life Outcomes, 8(13), 1–12.

    Google Scholar 

  28. Calvert, M. J., Freemantle, N., & Cleland, J. G. (2005). The impact of chronic heart failure on health-related quality of life data acquired in the baseline phase of the CARE-HF study. European Journal of Heart Failure, 7(2), 243–251.

    Article  PubMed  Google Scholar 

  29. Scuffham, P. A., Whitty, J. A., Mitchell, A., & Viney, R. (2008). The use of QALY weights for QALY calculations. Pharmacoeconomics, 26(4), 297–310.

    Article  PubMed  Google Scholar 

  30. Norman, R., Cronin, P., & Viney, R. (2013). A pilot discrete choice experiment to explore preferences for EQ-5D-5L health states. Applied Health Economics and Health Policy, 11(3), 287–298.

    Article  PubMed  Google Scholar 

  31. Nasreddine, Z. S., Phillips, N. A., Bédirian, V., Charbonneau, S., Whitehead, V., Collin, I., et al. (2005). The Montreal Cognitive Assessment, MoCA: A brief screening tool for mild cognitive impairment. Journal of the American Geriatrics Society, 53(4), 695–699.

    Article  PubMed  Google Scholar 

  32. Jha, S. R., Hannu, M. K., Chang, S., Montgomery, E., Harkess, M., Wilhelm, K., et al. (2016). The prevalence and prognostic significance of frailty in patients with advanced heart failure referred for heart transplantation. Transplantation, 100(2), 429–436.

    Article  PubMed  Google Scholar 

  33. Jha, S. R., Hannu, M. K., Gore, K., Chang, S., Newton, P., Wilhelm, K., et al. (2016). Cognitive impairment improves the predictive validity of physical frailty for mortality in patients with advanced heart failure referred for heart transplantation. Journal of Heart and Lung Transplantation, 35(9), 1092–1100.

    Article  Google Scholar 

  34. Ferguson, C. J. (2009). An effect size primer: A guide for clinicians and researchers. Professional Psychology: Research and Practice, 40(5), 532–538.

    Article  Google Scholar 

  35. Shrout, P. E., & Fleiss, J. L. (1979). Intraclass correlations : Uses in assessing rater reliability. Psychological Bulletin, 86(2), 420–428.

    Article  CAS  PubMed  Google Scholar 

  36. Reichenheim, M. E. (2004). Confidence intervals for the kappa statistic. The Stata Journal, 4(4), 421–428.

    Article  Google Scholar 

  37. Greenwood, B. N., Carnahan, S., & Huang, L. (2018). Patient-physician gender concordance and increased mortality among female heart attack patients. Proceedings of the National Academy of Sciences USA, 115(34), 8569–8574.

    Article  CAS  Google Scholar 

  38. Tsugawa, Y., Jena, A. B., Figueroa, J. F., Orav, E. J., Blumenthal, D. M., & Jha, A. K. (2017). Comparison of hospital mortality and readmission rates for medicare patients treated by male vs female physicians. JAMA Internal Medicine, 177(2), 206–213.

    Article  PubMed  PubMed Central  Google Scholar 

  39. McClure, N. S., Sayah, F. A., Xie, F., Luo, N., & Johnson, J. A. (2017). Instrument-defined estimates of the minimally important difference for EQ-5D-5L index scores. Value Health, 20(4), 644–650.

    Article  PubMed  Google Scholar 

  40. Allen, L. A., Stevenson, L. W., Grady, K. L., Goldstein, N. E., Matlock, D. D., Arnold, R. M., et al. (2012). Decision making in advanced heart failure: A scientific statement from the American Heart Association. Circulation, 125(15), 1928–1952.

    Article  PubMed  PubMed Central  Google Scholar 

  41. Thomas, S. A., Wince Chapa, D., Friedmann, E., Durden, C., Ross, A., Lee, M. C. I., et al. (2008). Depression in patients with heart failure: Prevalence, pathophysiological mechanisms, and treatment. Critical Care Nurse, 28(2), 40–55.

    Article  PubMed  Google Scholar 

  42. Rutledge, T., Reis, V. A., Linke, S. E., Greenberg, B. H., & Mills, P. J. (2006). Depression in heart failure a meta-analytic review of prevalence, intervention effects, and associations with clinical outcomes. Journal of the American College of Cardiology, 48(8), 1527–1537.

    Article  Google Scholar 

  43. Yang, X., Lupon, J., Vidan, M. T., Ferguson, C., Gastelurrutia, P., Newton, P. J., et al. (2018). Impact of frailty on mortality and hospitalization in chronic heart failure: A systematic review and meta-analysis. Journal of the American Heart Association, 7(23), e008251.

    Article  PubMed  PubMed Central  Google Scholar 

  44. Carver, C. S., & Scheier, M. F. (2000). Scaling back goals and recalibration of the affect system are processes in normal adaptive self-regulation: Understanding ‘response shift’ phenomena. Social Science and Medicine, 50, 1715–1722.

    Article  CAS  PubMed  Google Scholar 

  45. Aimo, A., Vergaro, G., Barison, A., Maffei, S., Borrelli, C., Morrone, D., et al. (2018). Sex-related differences in chronic heart failure. International Journal of Cardiology, 255, 145–151.

    Article  PubMed  Google Scholar 

  46. Tadic, M., Cuspidi, C., Plein, S., Belyavskiy, E., Heinzel, F., & Galderisi, M. (2019). Sex and heart failure with preserved ejection fraction: From pathophysiology to clinical studies. Journal of Clinical Medicine, 8(6), 792.

    Article  CAS  PubMed Central  Google Scholar 

  47. Tsao, C. W., Lyass, A., Enserro, D., Larson, M. G., Ho, J. E., Kizer, J. R., et al. (2018). Temporal trends in the incidence of and mortality associated with heart failure with preserved and reduced ejection fraction. JACC: Heart Failure, 6(8), 678–685.

    PubMed  Google Scholar 

  48. Lam, C. S. P., Arnott, C., Beale, A. L., Chandramouli, C., Hilfiker-Kleiner, D., Kaye, D. M., et al. (2019). Sex differences in heart failure. European Heart Journal, 40, 3859–3868.

    Article  PubMed  Google Scholar 

  49. Magnussen, C., Bernhardt, A. M., Ojeda, F. M., Wagner, F. M., Gummert, J., de By, T., et al. (2018). Gender differences and outcomes in left ventricular assist device support: The European Registry for Patients with Mechanical Circulatory Support. Journal of Heart and Lung Transplantation, 37(1), 61–70.

    Article  Google Scholar 

  50. National Institute for Health and Care Excellence. (2020). Guide to the methods of technology appraisal 2013. United Kingdom 2013. Retrieved May 22, 2020, from https://www.nice.org.uk/process/pmg9/chapter/foreword.

Download references

Author information

Authors and Affiliations

  1. Faculty of Health, University of Technology, Ultimo, NSW, Australia

    Roslyn A. Prichard, Julee Mcdonagh & Christopher S. Hayward

  2. School of Biomedical Sciences and Pharmacy, The University of Newcastle, Callaghan, Australia

    Fei-Li Zhao

  3. Centre for Health Economic Research and Evaluation, University of Technology Sydney, Ultimo, Australia

    Stephen Goodall

  4. Johns Hopkins School of Nursing, Johns Hopkins University, Baltimore, USA

    Patricia M. Davidson

  5. School of Nursing and Midwifery, Western Sydney University, Parramatta, NSW, Australia

    Phillip J. Newton

  6. School of Business and Law, Edith Cowan University, Joondalup, WA, Australia

    Ben Farr-Wharton

  7. Faculty of Medicine, University of New South Wales, Randwick, NSW, Australia

    Christopher S. Hayward

  8. St Vincent’s Hospital Heart and Lung Clinic, St Vincent’s Hospital Sydney, Darlinghurst, Australia

    Christopher S. Hayward

Authors
  1. Roslyn A. Prichard
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Fei-Li Zhao
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Julee Mcdonagh
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Stephen Goodall
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Patricia M. Davidson
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Phillip J. Newton
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Ben Farr-Wharton
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Christopher S. Hayward
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Roslyn A. Prichard.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Electronic supplementary material

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Prichard, R.A., Zhao, FL., Mcdonagh, J. et al. Discrepancies between proxy estimates and patient reported, health related, quality of life: minding the gap between patient and clinician perceptions in heart failure. Qual Life Res 30, 1049–1059 (2021). https://doi.org/10.1007/s11136-020-02722-z

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11136-020-02722-z

Keywords

Search

Navigation