KCCQ-12 Improved accuracy of health status assessment in the heart failure clinic

Research presented at the American Heart Association (AHA) Scientific Sessions in Chicago, Illinois, found that the Kansas City Cardiomyopathy Questionnaire-12 (KCCQ-12) was able to more accurately assess patients’ symptoms for clinicians.

Data presented today at the American Heart Association (AHA) Scientific Sessions offer insight into how the use of patient-reported outcomes (PROs) can help physicians better manage heart failure (HF).

A substudy of the PRO-HF trial found that use of the Kansas City Cardiomyopathy Questionnaire-12 (KCCQ-12) improved both the accuracy of clinicians’ assessments of health status and patients’ confidence in how well their physicians understood their symptoms.

Early results from the study, formally known as Patient-Reported Outcomes in a Heart Failure Clinical Trial, were presented in the final session of the conference, which opened Saturday in Chicago, Illinois, and ended Monday.

The results were published simultaneously in Circulation: Heart failure.

“The KCCQ-12 is a validated patient-reported health status instrument that assesses functional limitations, social limitations, quality of life, and frequency of heart failure-related symptoms,” said Dr. Alexander Sandhu, study author, who presented the findings.

The purpose of the substudy presented at the AHA was to determine whether patient-reported health status could improve the accuracy of clinician ratings, as clinicians typically rate the health status of heart failure patients using the New York Heart Association (NYHA) class . Sandhu explained that the KCCQ-12 has 4 domain scores and a total treatment score, each ranging from 0-100.

“Patient-reported health status is a better predictor of cardiovascular outcomes than NYHA class,” he said.

The substudy was a randomized, unblinded trial that investigated the effect of routine KCCQ-12 collection in a HF clinic. The study enrolled patients who attended the Stanford HF Clinic with a scheduled visit from August 30, 2021, to June 30, 2022. These patients were then randomized into 2 groups: usual care or KCCQ-12 assessment .

Clinicians were asked about their patients’ NYHA class, quality of life, disease trajectory, and symptom frequency, and they were asked how they perceived the administration of the KCCQ-12. These responses were then compared to the responses patients provided through their KCCQ-12 survey. Patients were also asked about their interactions with their clinicians.

Patients were also given another survey to assess their level of agreement with 8 positive statements about their clinician’s understanding of their health condition, communication, agreement on treatment goals, and the clinician-patient relationship.

Study subjects had a median age (interquartile range) of 63.9 (51.8-72.8) years, and 87.3% had a previous diagnosis of heart failure or cardiomyopathy; 53.3% had an ejection fraction greater than 50%. The mean KCCQ-12 total score was 82.

Of the 1248 patients in the PRO-HF study, 1051 patients had a visit during the substudy. The KCCQ-12 cohort included 528 patients whose KCCQ-12 scores were provided to their treating clinicians. Patients in the usual care group completed the KCCQ-12, but the results were not provided to their clinicians.

The study found that the correlation between NYHA class and patient-reported health status was stronger when clinicians scored the KCCQ-12 compared to the usual care score (r, –0.73 vs r, –0.61). A chart is presented that illustrates where clinicians classified patients according to the NYHA, with patient-reported outcomes from the usual care arm and patients who completed the KCCQ-12.

“Focusing on NYHA class 3…usual care patients were more likely, despite being classified as having class 3 symptoms, to describe very good health status with a KCCQ-12 score above 70 or very poor health status with a KCCQ-12 score less than 20, indicating greater disagreement in the usual care arm,” Sandhu said.

Patients in the KCCQ-12 group found greater concordance between clinician and patient assessment of quality of life and symptom frequency compared to patients in the usual care group, with 7 of 8 responses to the positive statements having higher odds of being concordant scores in KCCQ -12 hand.

Patients were more likely to agree that clinicians understood their symptoms if they were in the KCCQ-12 arm (95.2% vs. 89.7%; odds ratio, 2.27; 95% CI, 1.32-3 .87) compared to patients in the usual care group. Both groups reported similar quality in the therapeutic alliance and communication between clinicians.

Heart failure clinicians have also found the KCCQ-12 useful in improving consistency in history taking, accurate understanding of quality of life, focusing conversations, and tracking trends.

There were some limitations to this study. The study was single-center and unblinded, which may have influenced interactions between clinicians. The cohort was less symptomatic with a high KCCQ-12 score. Follow-up was short and it may take time for clinicians to fully implement these results in their practice.

The study concluded that collecting the KCCQ-12 can improve the accuracy of the clinician’s assessment of health status, and patients perceive a better assessment of the clinician’s health status when using the KCCQ-12. Clinicians were also found to find value in KCCQ-12 data. How this will affect clinical processes and outcomes is still being evaluated in the long term.


Sandhu AT, Zheng J, Kalwani NM, et al. Early results of the patient-reported outcome measure in heart failure clinical trial (PRO-HF). Presented at: AHA 2022; Chicago, Illinois; November 5-7, 2022 Session LBS.02

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