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Published on: August 8, 2022
Gender disparity in a large nonreferral-based cohort of hypertrophic cardiomyopathy patients
M Brimacombe1, D Walter, L Salberg
1Department of Preventive Medicine, NJMS-UMDNJ, Newark, New Jersey 07101-1709, USA. brimacmbe@umdnj.edu
Insights
Women with hypertrophic cardiomyopathy (HCM) report more symptoms and take more non-HCM medications than men. This patient database offers insights into diverse HCM experiences.
Area of Science:
- Cardiology
- Genetics
- Patient Advocacy
Background:
- Hypertrophic cardiomyopathy (HCM) is a genetic heart muscle disease affecting 1 in 500 individuals.
- HCM presents with high variability in clinical symptoms and severity.
- Existing research often relies on hospital-based or referral populations.
Purpose of the Study:
- To investigate gender-based differences in self-reported symptoms and medication use among HCM patients.
- To leverage the Hypertrophic Cardiomyopathy Association (HCMA) database for insights into a diverse, non-referral patient population.
Main Methods:
- Utilized data from 1228 HCM patients within the HCMA database.
- Employed phone interviews and mailed surveys for data collection from consenting patients.
- Analyzed self-reported symptom and medication patterns, comparing male and female participants.
Main Results:
- Females were more likely than males to report a family history of HCM, chest pain, fatigue, lightheadedness, and palpitations.
- A higher percentage of females (44.9%) reported four or five symptoms compared to males (31.4%).
- Females were also more likely to be taking non-HCM-related medications.
Conclusions:
- The HCMA database provides a valuable resource for studying non-hospital-based HCM patient cohorts.
- Significant gender-related disparities exist in HCM symptom profiles and medication use.
- Findings are subject to the limitations inherent in self-reported data and the study's design.
Background:
Hypertrophic cardiomyopathy (HCM) is a genetic disease of the heart muscle that affects 1 in 500 people. HCM is highly heterogeneous in its clinical presentation and severity. HCM research has typically been carried out using hospital-based and referral populations. The Hypertrophic Cardiomyopathy Association (HCMA) is a patient support group founded in 1996. The HCMA membership and related database represent a large, heterogeneous, and diverse nonhospital and nonreferral-based HCM patient population.
Methods:
To examine gender disparities in self-reported symptom and medication patterns among HCM patients participating in the HCMA database, HCMA patient information was entered into an Access database. Patients were added to the HCMA database when they joined or requested information from the HCMA. Consenting patients were interviewed by phone or mailed an intake survey.
Results:
Information was available for 1228 HCM patients from 49 states and 32 countries (549 females, 679 males). Females were significantly more likely to report a family history of HCM to experience chest pain, fatigue, lightheadedness, and palpitations and to be taking non-HCM-related medications. In terms of symptom clustering, 44.9% of females had four or five symptoms vs. 31.4% of the males.
Conclusions:
The HCMA patient database represents a nonhospital-based patient cohort useful in scientific investigations of HCM. Observed gender-related disparities in HCM symptom profiles are significant but are subject to the design and self-report-based limitations of the HCM database.
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