Construct and predictive validity of the Kansas City Cardiomyopathy Questionnaire in adult congenital heart disease

Authors: BYRNE, RYAN - Baylor College Of Medicine; NAIR, AJITH - Baylor College Of Medicine; DOLGNER, STEPHEN - Baylor College Of Medicine; CHOUDHRY, SWATI - Baylor College Of Medicine; HICKEY, EDWARD - Baylor College Of Medicine; WOOD, ALEXIS - Children'S Nutrition Research Center (CNRC); FEDSON, SAVITRI - Baylor College Of Medicine; BOZKURT, BIYKEM - Baylor College Of Medicine; BRODA, CHRISTOPHER - Baylor College Of Medicine

Submitted to: JACC: Advances
Publication Type: Peer Reviewed Journal
Publication Acceptance Date: 6/23/2025
Publication Date: 7/25/2025
Citation: Byrne, R.D., Nair, A.P., Dolgner, S.J., Choudhry, S., Hickey, E.J., Wood, A.C., Fedson, S., Bozkurt, B., Broda, C.R. 2025. Construct and predictive validity of the Kansas City Cardiomyopathy Questionnaire in adult congenital heart disease. JACC: Advances. 4(8):Article 102020. https://doi.org/10.1016/j.jacadv.2025.102020.
DOI: https://doi.org/10.1016/j.jacadv.2025.102020

Interpretive Summary: Heart failure is becoming more common in adults with obesity, causing serious health problems and high medical costs. Patient reported outcomes are critical for optimizing patient care, but to date, there is lack of short, validated assessments of outcomes for heart failure. This study examined whether a tool called the Kansas City Cardiomyopathy Questionnaire (KCCQ) was appropriate for tracking patient-reported symptoms and could predict outcomes related to heart failure — filling a gap in how we measure and respond to patient needs. The study found that people with more complex or serious heart problems, including those with heart failure or worse symptoms, had lower KCCQ scores. These lower scores also predicted which patients were more likely to be hospitalized or even die . People who scored 50 or lower on the KCCQ had the worst outcomes, suggesting potential for the development of clinical cut-offs related to KKCQ answers. Overall, the study indicated that the KCCQ could be a useful tool for doctors to track heart health and predict risk in patients, thus could help to improve care, especially for those with added risks like obesity.

Technical Abstract: The Kansas City Cardiomyopathy Questionnaire (KCCQ) is an Food and Drug Administration-approved health status measure for patients with heart failure (HF) but has not been directly assessed in adult congenital heart disease (ACHD). This study evaluates construct and predictive validity of the KCCQ in ambulatory ACHD patients. We performed cross-sectional and prospective cohort studies of ACHD patients who completed the KCCQ to assess construct and predictive validity, respectively. KCCQ scores were compared across ACHD complexity categories, disease characteristics and physiologic failure, and within 2 primary composite outcomes: death or all-cause hospitalization (DH) and death or interventional cardiac procedures (DP). Survival analysis was performed for each composite outcome. A total of 109 patients completed 129 KCCQs (median age 29.0 years; 41.3% female). Median KCCQ scores were significantly lower for anatomically complex patients (76.6 in great complexity, 89.0 in simple/moderate complexity; P=0.015), advanced ACHD physiological stage (72.6 in D, 98.0 in A; P<0.001), patients with physician-reported HF (72.2 vs 87.2 without HF; P<0.001), and advanced NYHA functional class (NYHA III: 44.4, NYHA I: 96.5; P<0.001). Median follow-up time was 16.3 months in the predictive validity analysis (N=92 patients). KCCQ was significantly lower for ACHD patients who experienced DH (66.0 vs 85.0; P=0.002) or DP (53.5 vs 85.0; P=0.001). Patients scoring <=50 had significantly worse event-free survival (P=0.004 for DH; P=0.001 for DP). The KCCQ has construct and predictive utility in ACHD and provides an opportunity to assess health status in ACHD both clinically and in future ACHD research.