Study Shows Importance of Patient-Reported Outcomes in Heart Failure Care

More than twice as many patients saw changes in their patient-reported outcome measures compared with their traditional NYHA measures used by clinicians.

A recent study published in JAMA Cardiology supports the importance of evaluating patient-reported outcomes in routine heart failure care.

The study, led by DCRI’s Stephen Greene, MD, revealed that perceptions of health status may differ substantially between patients with heart failure and their clinicians. Specifically, the study compared two measures: the New York Heart Association (NYHA) functional class, the standard assessment by clinicians, versus the Kansas City Cardiomyopathy Questionnaire Overall Summary Score (KCCQ-OS), which reflects the health status reported by patients.

The study included 2872 patients from U.S. clinical practice and examined longitudinal changes and correlations between the two measures over 12 months of outpatient follow-up. The investigators also evaluated the association of patient-reported versus clinician-reported changes in health status with risk of death and hospitalization.

During 12 months of follow-up, the majority of patients reported meaningful changes in KCCQ-OS. However, for most patients, there was no change in the NYHA class assigned to them by the clinician; in fact, more than twice as many patients saw changes in their KCCQ-OS compared with their NYHA class. Even among patients reporting very large changes in health status by KCCQ-OS, there was, on average, no change in NYHA class.

Furthermore, positive changes in the patient-reported KCCQ-OS were associated with lower risk of death and the composite of death and heart failure hospitalization. In contrast, changes in NYHA class reported by clinicians were not associated with outcomes.

The study is, to the researchers’ knowledge, the first comprehensive direct comparison of NYHA class and patient-reported outcomes for heart failure in contemporary U.S. clinical practice.

“This study truly highlights the importance of the patient perspective in monitoring the status of heart failure patients,” Greene said. “Patients were much more likely to detect a change in their health than clinicians using the NYHA class. But not only were the patients more likely to detect changes, their ability to detect change was validated by the strong association with clinical events. In contrast, the NYHA class used by clinicians detected far less changes in health status, and what changes were detected had no association with clinical outcomes.”

“Relatively few centers currently incorporate patient-reported outcomes in their routine outpatient care for heart failure,” Greene continued. “This study provides strong support for changing that, and highlights patient-reported outcomes as potentially more reliable and actionable measures of health status compared with the NYHA class.”

Additional DCRI contributors to this study include Adam DeVore, MD, MHS; Laine Thomas, PhD; Adrian Hernandez, MD, MHS; and Anne Hellkamp, MS. Fredonia Williams, EdD, a patient partners who served as an Adaptor for the DCRI’s ADAPTABLE trial, also contributed to this study.

To hear Greene and his co-authors discuss the study, listen to this episode of JAMA Cardiology Author Interviews.

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