March 24, 2017: Patient-Reported Outcomes

March 24, 2017: Patient-Reported Outcomes

Slides: Slides


Patient-Reported Outcomes: A Critical Insight into the Impact of Therapy


John Spertus, MD, MPH, Daniel Lauer/Missouri Endowed Chair and Professor at the University of Missouri-Kansas City, and Clinical Director of Outcomes Research at Saint Luke’s Mid America Heart Institute


Patient-reported outcomes; PROs; Health status measurement; Quality assessment; Quality of life; Outcomes assessment: Kansas City Cardiomyopathy Questionnaire; KCCQ; Self-efficacy; Patient perspective; Heart failure

Key Points

  • Patient-reported outcomes (PROs) assess how a disease affects patients’ health status—their symptoms, functional limitations, and quality of life. Attributes of health status measures include:
    • Validity: Does the instrument capture what is important to patients (content)? Does it measure what it is supposed to (criterion)?
    • Reliability: Are the results the same when given repeatedly to stable patients?
    • Responsiveness: Do the results reflect changes in patients’ disease status?
    • Interpretability: What does a given score or change in score mean?
    • Translations: Are linguistically and culturally appropriate translations available?
  • The Kansas City Cardiomyopathy Questionnaire (KCCQ) is a valid, reliable, and responsive instrument used to measure health-related quality of life for patients with heart failure. Treatment goals include helping patients live longer and feel better.
  • PROs capture a key outcome from patients’ perspectives, and the integration of PROs into development programs should occur early.

Discussion Themes

The challenge of new metrics includes how to interpret scores at a single point in time and when scores change. Metrics need to be translated to a clinical framework and interpreted before they can be used to predict patient outcomes.

What about using accelerometers and other activity monitors linked to GPS data?

For More Information

Utility of Patient-Reported Outcome Instruments in Heart Failure (Kelkar et al., JACC Heart Failure, 2016)

@PCTGrandRounds, @Collaboratory1, @PCORnetwork