The Kansas City Cardiomyopathy Questionnaire

What do I need to know about the KCCQ?

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  1. What is the Kansas City Cardiomyopathy Questionnaire?

  2. How did the Kansas City Cardiomyopathy Questionnaire come to be, and why is it named that?

  3. What are the scales in the KCCQ, and what do they mean?


  1. What is the Kansas City Cardiomyopathy Questionnaire?

    The Kansas City Cardiomyopathy Questionnaire is the leading health-related quality-of-life measure for patients with congestive heart failure. It is a reliable, predictive tool that tracks how patients are doing if they have weakened heart muscle due to prior heart attacks, heart valve problems, viral infections, or other causes. It has been used in hundreds of clinical trials involving thousands of sites and tens of thousands of patients.

  2. How did the Kansas City Cardiomyopathy Questionnaire come to be, and why is it named that?

    The Kansas City Cardiomyopathy Questionnaire (KCCQ) was developed by Dr. John Spertus once he finshed his fellowship and became director of clinical research at the Mid-America Heart Institute, which is located in Kansas City. Once again his friends urged him to name it the “Spertus Cardiomyopathy Questionnaire”, but once again he demurred.

    John’s process for creating the KCCQ was similar to the SAQ and included these steps:

    1. He constructed the KCCQ’s questions using psychological research that explains how patients understand and communicate about their physical conditions.
    2. He defined a statistical analysis approach that correlates patient responses to the questions to other existing data — such as echocardiogram results, for instance.
    3. He performed large-scale validation studies that compared KCCQ data against these other data and used these results to further refine the questions.

    This work was all done in the late 1990s to early 2000s, and the KCCQ has been in regular use in research settings ever since. Like the SAQ, its use in regular clinical settings has been limited by the expense and nuisance of using paper forms. It is only recently that enough patients are finally connected to the Internet that it has become possible to offer a service such as the one that MyHealthOutcomes provides for the KCCQ.

  3. What are the scales in the KCCQ, and what do they mean?

    The answers patients give to the KCCQ’s questions are used to calculate scores in ten scales:

    • Physical Limitation: a measure of how much a patient’s condition is hampering his ability to do what he wants to do
    • Symptom Stability: a measure of whether a patient’s symptoms are changing over time
    • Symptom Frequency: a measure of how often a patient has symptoms
    • Symptom Burden: a measure of what the impact of these symptoms are on the patient’s well-being
    • Total Symptom: a combined measure of the symptom scales
    • Social Limitation: a measure of how much a patient’s interpersonal relations are impacted by her condition
    • Self-Efficacy: a measure of how well a patient can manage her care, find answers and help
    • Quality of Life: a measure of the overall impact of a patient’s condition on a patient’s interpersonal relationships and state of mind
    • Clinical Summary: a combined measure of symptoms and social factors
    • Overall Summary: a combined measure of all the above