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Validation of KCCQ in Symptomatic Obstructive Hypertrophic Cardiomyopathy
Quick Takes
- KCCQ was easily understood by patients with obstructive HCM.
- When compared with other measures of physical limitations, social limitations, symptoms, and quality of life, KCCQ domains showed good correlation. In addition, KCCQ had high test-retest reliability and responsiveness to changes in health status when assessed longitudinally.
- KCCQ is a relevant endpoint for trials in obstructive HCM patients as well as in clinical practice as a validated measure for health status.
Study Questions:
Is the Kansas City Cardiomyopathy Questionnaire (KCCQ) a valid, reliable, and responsive measure of health status in patients with obstructive hypertrophic cardiomyopathy (oHCM)?
Methods:
Representativeness of the KCCQ was tested using qualitative interviews in 26 US patients with oHCM not enrolled in an HCM trial. Health status in these patients was measured using the 23-item KCCQ. The validity, reliability, responsiveness, and interpretability of the KCCQ was tested in 196 patients with oHCM enrolled in the EXPLORER-HCM trial.
Results:
The 26 patients interviewed were aged 18-65 years and confirmed that the KCCQ was easy to understand and a comprehensive measure in covering key concepts relevant to their experience. Three patients reported symptoms not captured by KCCQ. Among the 196 patients enrolled in the EXPLORER-HCM trial, mean age was 58 years, 61% were men, and mean left ventricular outflow tract (LVOT) gradient at rest was 51.5 mm Hg. All KCCQ domains correlated strongly with other standards for symptoms (HCM Symptom Questionnaire [HCMSQ]), physical (New York Heart Association, exercise duration), social limitation (work productivity and activity impairment), and quality of life (EQ-5D visual analogue scale). Test-retest reliability for each KCCQ domain was high. Responsiveness of KCCQ domains were compared using a scale asking patients to contrast current status to baseline. Clinically significant mean changes were consistent with those observed in heart failure.
Conclusions:
In a cohort of patients with oHCM, KCCQ was easily understood, valid, reliable, and responsive to changes in health status.
Perspective:
HCM, whether obstructive or not, can be associated with disabling symptoms. While current guidelines endorse treatment for HCM to alleviate symptoms and improve quality of life, there are currently no validated measures of health status in HCM patients. The HCMSQ only measures symptoms and not health status. In this study, the KCCQ was a valid, reliable, and responsive measure of health status in oHCM patients. The study is remarkable for the authors rigorously comparing KCCQ domains to several other measures of physical limitations, social limitations, symptoms, and quality of life. In addition, KCCQ measured longitudinally was responsive to changes. Notable findings in this study include a small proportion of patients reporting symptoms not captured by the KCCQ (such as palpitations, dizziness, and angina) and the cohort was restricted to oHCM patients. Whether they extend to patients with nonobstructive HCM are not known. However, in addition to being a useful endpoint in trials, KCCQ can also be used as a clinical tool in routine practice for management of oHCM patients.
Clinical Topics: Cardiovascular Care Team, Heart Failure and Cardiomyopathies, Prevention, Acute Heart Failure
Keywords: Angina Pectoris, Cardiomyopathies, Cardiomyopathy, Hypertrophic, Dizziness, Exercise Tolerance, Health Status, Heart Failure, Quality of Life, Surveys and Questionnaires, Secondary Prevention
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