Overview of the HCMSQ
Hypertrophic Cardiomyopathy Questionnaire
Understanding Hypertrophic Cardiomyopathy (HCM)
Hypertrophic cardiomyopathy (HCM) is a chronic, progressive myocardial disorder characterized by left ventricular hypertrophy.Reaney M et al. Development of the Hypertrophic Cardiomyopathy Symptom Questionnaire (HCMSQ):a new patient-reported outcome (PRO) instrument. Pharmacoecon Open. 2022;6:563-574. HCM is classified as obstructive or nonobstructive based on the presence or absence, respectively, of left ventricular outflow tract obstruction.Reaney M et al. Longitudinal Psychometric Analysis of the Hypertrophic Cardiomyopathy Symptom Questionnaire (HCMSQ) Using Outcomes from the Phase III EXPLORER-HCM Trial. Pharmacoecon Open. 2022;6:575-586. Based on patients’ experiences with obstructive and nonobstructive HCM, core symptoms include dyspnea, fatigue, chest pain, dizziness, palpitations, and syncope.Reaney M et al. Development of the Hypertrophic Cardiomyopathy Symptom Questionnaire (HCMSQ):a new patient-reported outcome (PRO) instrument. Pharmacoecon Open. 2022;6:563-574. Zaiser E et al. Patient experiences with hypertrophic cardiomyopathy: a conceptual model of symptoms and impacts on quality of life. J Patient Rep Outcomes. 2020;4:102-112. These symptoms can have physical, emotional, and social impacts on patients and may contribute to significant impairment in quality of life.Reaney M et al. Longitudinal Psychometric Analysis of the Hypertrophic Cardiomyopathy Symptom Questionnaire (HCMSQ) Using Outcomes from the Phase III EXPLORER-HCM Trial. Pharmacoecon Open. 2022;6:575-586. Zaiser E et al. Patient experiences with hypertrophic cardiomyopathy: a conceptual model of symptoms and impacts on quality of life. J Patient Rep Outcomes. 2020;4:102-112.
Download the HCMSQ
There are 2 versions of the HCMSQ : the 24-hour recall version (HCMSQ-24h) and the 7-day recall version (HCMSQ-7d). Reaney M et al. Development of the Hypertrophic Cardiomyopathy Symptom Questionnaire (HCMSQ):a new patient-reported outcome (PRO) instrument. Pharmacoecon Open. 2022;6:563-574. Reaney M et al. Longitudinal Psychometric Analysis of the Hypertrophic Cardiomyopathy Symptom Questionnaire (HCMSQ) Using Outcomes from the Phase III EXPLORER-HCM Trial. Pharmacoecon Open. 2022;6:575-586. Price J et al. Validation of the Hypertrophic Cardiomyopathy Symptom Questionnaire (HCMSQ) 7-day recall. Poster presentation at the ACC 2025 meeting; March 29-31, 2025; Chicago, Illinois. Abstract 11377.
24-hour Recall HCMSQ
Questionnaire and Scoring Document
7-day Recall HCMSQ
Questionnaire and Scoring Document
Versions of the HCMSQ: 24-Hour and 7-Day Recall
The HCMSQ-24h has been translated into multiple languages and is used to derive key study endpoints in clinical trials in HCM. It has been validated in obstructive HCM.Reaney M et al. Longitudinal Psychometric Analysis of the Hypertrophic Cardiomyopathy Symptom Questionnaire (HCMSQ) Using Outcomes from the Phase III EXPLORER-HCM Trial. Pharmacoecon Open. 2022;6:575-586. The HCMSQ-24h is completed daily by participants, with scores aggregated over a week’s time to provide a weekly average symptom score.Reaney M et al. Development of the Hypertrophic Cardiomyopathy Symptom Questionnaire (HCMSQ):a new patient-reported outcome (PRO) instrument. Pharmacoecon Open. 2022;6:563-574. Reaney M et al. Longitudinal Psychometric Analysis of the Hypertrophic Cardiomyopathy Symptom Questionnaire (HCMSQ) Using Outcomes from the Phase III EXPLORER-HCM Trial. Pharmacoecon Open. 2022;6:575-586.
The HCMSQ-7d was developed to facilitate the use of the HCMSQ in clinical trials and support its utility in routine cardiovascular clinical practice (eg, completion once per week vs 7 times per week). It has been qualitatively validated in adults with HCM.Price J et al. Validation of the Hypertrophic Cardiomyopathy Symptom Questionnaire (HCMSQ) 7-day recall. Poster presentation at the ACC 2025 meeting; March 29-31, 2025; Chicago, Illinois. Abstract 11377. Other efforts to validate the 7-day recall version are still ongoing. The HCMSQ-7d has been translated into multiple languages and has been used to derive key study endpoints in several HCM studies.
Importance of Patient-Reported Outcomes in HCM
Treatment goals in HCM focus on the relief of symptoms.Reaney M et al. Development of the Hypertrophic Cardiomyopathy Symptom Questionnaire (HCMSQ):a new patient-reported outcome (PRO) instrument. Pharmacoecon Open. 2022;6:563-574. As such, incorporating patient perspectives into drug development and clinical practice is important.Zaiser E et al. Patient experiences with hypertrophic cardiomyopathy: a conceptual model of symptoms and impacts on quality of life. J Patient Rep Outcomes. 2020;4:102-112. Kosinski M et al. Patient-reported outcome measure development and validation: a primer for clinicians. J Allergy Clin Immunol Pract. 2024;12:2554-2561. Zannad F et al. Patient-reported outcome measures and patient engagement in heart failure clinical trials: multi-stakeholder perspectives. Eur J Heart Fail. 2023;25:478-487. The Hypertrophic Cardiomyopathy Symptom Questionnaire (HCMSQ) is the first HCM-specific patient-reported outcome (PRO) measure designed to assess patient symptoms.Reaney M et al. Development of the Hypertrophic Cardiomyopathy Symptom Questionnaire (HCMSQ):a new patient-reported outcome (PRO) instrument. Pharmacoecon Open. 2022;6:563-574. The HCMSQ was developed rigorously and iteratively in line with FDA guidance on PRO development. Reaney M et al. Development of the Hypertrophic Cardiomyopathy Symptom Questionnaire (HCMSQ):a new patient-reported outcome (PRO) instrument. Pharmacoecon Open. 2022;6:563-574. It was also based on a previously published HCM disease conceptual model that incorporated evidence from a literature review, a patient online survey, clinician interviews, and in-depth patient interviews. Reaney M et al. Development of the Hypertrophic Cardiomyopathy Symptom Questionnaire (HCMSQ):a new patient-reported outcome (PRO) instrument. Pharmacoecon Open. 2022;6:563-574. Reaney M et al. Longitudinal Psychometric Analysis of the Hypertrophic Cardiomyopathy Symptom Questionnaire (HCMSQ) Using Outcomes from the Phase III EXPLORER-HCM Trial. Pharmacoecon Open. 2022;6:575-586. Zaiser E et al. Patient experiences with hypertrophic cardiomyopathy: a conceptual model of symptoms and impacts on quality of life. J Patient Rep Outcomes. 2020;4:102-112.
Structure and Scoring of the HCMSQ
This 9-item HCMSQ produces 4 domain scores (shortness of breath [4 items], tiredness [1 item], cardiovascular symptoms [3 items], and syncope [1 item]), of which the first 3 domains are combined to create a total score, with lower scores indicating a lower presence of symptoms overall. Reaney M et al. Development of the Hypertrophic Cardiomyopathy Symptom Questionnaire (HCMSQ):a new patient-reported outcome (PRO) instrument. Pharmacoecon Open. 2022;6:563-574. Reaney M et al. Longitudinal Psychometric Analysis of the Hypertrophic Cardiomyopathy Symptom Questionnaire (HCMSQ) Using Outcomes from the Phase III EXPLORER-HCM Trial. Pharmacoecon Open. 2022;6:575-586. It is a short questionnaire and typically takes less than 2 minutes to complete.