Many people with hypertrophic cardiomyopathy (HCM) experience adverse physical and psychological effects from their condition. Researchers from the American Heart Association have found that some patients with HCM have long diagnostic journeys and, once diagnosed, face anxiety and necessary changes in their daily routine. Patients could benefit from increased recognition of CMH by clinicians and increased patient education and communication efforts.
Hypertrophic cardiomyopathy, or HCM, occurs when the walls of the heart thicken and stiffen, which can cause shortness of breath, chest pain, heart palpitations, fatigue, fainting, and other atypical symptoms in patients. people of all ages. It affects about 1 in 500 American adults.
HCM often goes undiagnosed and can lead to heart failure and increase the risk of atrial fibrillation, stroke and sudden cardiac death, according to the American Heart Association, the world’s leading nonprofit focused on heart and brain health for all.
“Receiving a diagnosis of HCM can result in medical recommendations that have a dramatic impact on an individual’s lifestyle and physical activities,” said Deena Zytnick, DrPH, senior program evaluation analyst at American Heart Association and lead author of the study. “Better understanding the experiences and perceptions of HCM patients, especially with regard to the diagnosis and treatment of HCM, is integral to identifying barriers for patients and implementing patient-centered care. . “
For the study, published in Heart and Lung: The Journal of Cardiopulmonary and Acute Care, the researchers conducted semi-structured interviews with 32 middle-aged and older adults with HCM who had been diagnosed for at least a year and had shown symptoms within 30 days of their interviews.
In addition, half of the participants underwent surgical septal myectomy, an open heart surgery in which a surgeon shrinks or removes part of the thickened septum between the ventricles, which relieves the blockage in the heart to improve blood flow. One patient underwent a heart transplant.
The researchers found:
- Participants with a longer time to diagnosis of HCM often had atypical symptoms or denied their symptoms and misdiagnoses. “It took a patient up to 26 years before HCM was diagnosed,” Zytnick said. “One problem may be that the symptoms of HCM may present the same as symptoms of other conditions, such as asthma.”
- Patients received HCM training and support from healthcare professionals and non-medical resources.
- Some people with HCM felt anxiety or were in denial or upset by their “life-changing” diagnosis. “People talked about changing their living space because they wanted to be close to multidisciplinary HCM centers, where a healthcare team including both lay cardiologists and highly specialized HCM experts worked together. “Zytnick said. “For some people who may be younger and of childbearing age, it even affected their decisions about whether they wanted to have biological children.
- Others have experienced gratitude, acceptance, and increased attention to healthy habits when they have been diagnosed.
- Over time, they said they were less afraid as they used HCM patients’ resources and treatment options.
The results of the survey suggest the need for more resources for patients and more education for healthcare professionals to help reduce the adverse physical and psychological effects of HCM, the authors said.
Q&A: Hypertrophic cardiomyopathy
Deena Zytnick et al, Exploring experiences of diagnosis, treatment, and quality of life impacts of hypertrophic cardiomyopathy in middle-aged and older adults: an interview study, Heart & Lung (2021). DOI: 10.1016 / j.hrtlng.2021.06.004
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