Quality of Life Research

, Volume 25, Issue 9, pp 2213–2220 | Cite as

Quantifying clinical change: discrepancies between patients’ and providers’ perspectives

  • Rachel P. Dreyer
  • Philip G. Jones
  • Shelby Kutty
  • John A. Spertus



Interpreting the clinical significance of changes in patient-reported outcomes (PROs) is critically important. The most commonly used approach is to anchor mean changes on PRO scores against a global assessment of change. Whether the assessor of global change should be patients or their physicians is unknown. We compared patients’ and physicians’ assessments of change over time to examine which was more aligned with patients’ changes in PRO measures.


A total of 459 chronic heart failure patients aged >30 years were enrolled from 13 US centers. Data were obtained by medical record abstraction, physical assessments, and patient interviews at a baseline clinic visit and 6 weeks later. Health status was measured with the disease-specific Kansas City Cardiomyopathy Questionnaire (KCCQ), and both patients and physicians completed a validated 15-level global assessment of change, ranging from large deterioration to large improvement.


There was substantial variation between physicians/patients’ global assessment of clinical change (weighted kappa = 0.36, 95 % CI 0.28, 0.43). Overall, physician assessments were more strongly correlated with change on the KCCQ summary score than were patients’ assessments (physician R = 0.37, patient R = 0.29).


There was substantial variation between patients’ and physicians’ global assessment of 6-week change in heart failure status. Physician assessments of the importance of clinical changes were more strongly associated with changes in all domains of patient-reported health status, as assessed by the KCCQ, and may provide a more consistent method for defining the clinical importance of changes in patients’ health status.


Patient-reported outcome measures Heart failure Kansas City Cardiomyopathy Questionnaire Clinical change 


Compliance with ethical standards

Conflict of interest

Dr. Spertus is supported by grants from Gilead, Genentech, Lilly, Amorcyte, and EvaHeart, and has a copyright for the Kansas City Cardiomyopathy Questionnaire. Dr. Kutty is supported by a grant from the American Heart Association. All other authors report no conflict of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Declaration of Helsinki and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

Supplementary material

11136_2016_1267_MOESM1_ESM.docx (1.8 mb)
Supplementary material 1 (DOCX 1854 kb)


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Copyright information

© Springer International Publishing Switzerland 2016

Authors and Affiliations

  • Rachel P. Dreyer
    • 1
    • 2
  • Philip G. Jones
    • 3
    • 4
  • Shelby Kutty
    • 5
  • John A. Spertus
    • 3
    • 4
  1. 1.Center for Outcomes Research and Evaluation (CORE)Yale-New Haven HospitalNew HavenUSA
  2. 2.Section of Cardiovascular Medicine, Department of Internal MedicineYale School of MedicineNew HavenUSA
  3. 3.School of Medicine, Biomedical and Health InformaticsUniversity of Missouri – Kansas CityKansas CityUSA
  4. 4.Saint Luke’s Mid America Heart InstituteUniversity of Missouri – Kansas CityKansas CityUSA
  5. 5.Department of PediatricsChildren’s Hospital and Medical CenterOmahaUSA

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