A Window into the HCM Experience

Interviews with 32 patients shows a wide range of experiences but authors say one takeaway is a need for better coordination between HCM specialist and community cardiologists.

Structured interviews with 32 adults patients diagnosed with hypertrophic cardiomyopathy (HCM) revealed a wide range of experiences, including misdiagnosis and fear and anxiety for some but also gratitude, mindfulness and support from HCM patients, according to results reported in November-December issue of Heart & Lung.

Deena Zytnick, Dr. Ph., of the Center for Health Metrics and Evaluation of the American Heart Association, and her co-authors noted that while there is a growing number of studies of HCM diagnosis and treatment, less is understood about the experiences of patients. They used a database of people who subscribed to HCM-related newsletter to find people to interviewed. They elected to conduct one-on-one interviews instead of focus groups because of the “relative intimacy and privacy of the information shared.”

The people diagnosed with HCM were asked about their diagnosis experience, support from healthcare professionals and how HCM has affected their lives.

The experience of diagnosis was especially varied. One of the patients said a cardiologist walked in during his echocardiogram, took a look, and made the HCM diagnosis right away. Another patient said that “between 18 and 32, I had so many doctors that said I had nothing. Including cardiologists.”

The interviews also revealed a broad range of experience with healthcare professionals. The patients saw a cardiologist, but some saw general cardiologists while others sought care from a cardiologist who specializes in HCM. Several interviewees described tension among physicians who didn’t communicate well with one another and were in conflict over who was in control of their care, “If you take away one message out of this, that I would encourage you to, these silo professions don’t necessarily help,” one patient told an interviewer. “Guys stop fighting. Yes, I have asthma. Yes, I have a heart condition. There was a level of rivalry between them that was totally counterproductive.”

HCM itself presented different challenges. Many of the patients described HCM as limiting their activity, having to rely more on others, and affecting where they can live (proximity to one of the 43 Hypertrophic Cardiomyopathy Association’s Centers of Excellence). Some did report positive thoughts and emotions of optimism and acceptance. “Because I don’t know how many years … I’m thankful every day when I wake up,” said one of the patients. “And when I encounter a really tough time, I think back to that open-heart surgery and I say, ‘If I can survive that, I can survive anything.’” The authors the fear of many patients eased with time,

Zytnick and her co-authors said the interviews showed a need for good relationships between tertiary center specialists and community cardiologists. “Needless duplication of testing or office visits as a result of poor communication between healthcare professionals does not benefit the patient or the healthcare system at large, yet this is a common occurrence in clinical practice,” they wrote.

They also referenced the positive emotions expressed by some patients and suggested that teaching patients constructive coping mechanisms should be part of HCM care.