The risks and benefits of exercise for people with hypertrophic cardiomyopathy (HCM) need to be further investigated, say researchers in America.
A new study there says patients with the condition are less physically active than the general population and have higher rates of obesity. Exercise restrictions also have a negative impact on emotional well-being in most.
Lead author Dr Sharlene Day from the University of Michigan said the HCM patients were less likely to smoke or drink alcohol but much less likely to exercise, either through work-based physical activity or recreation.
She added that many of these patients were able to be active and the exercise restrictions were based not on disease severity, but on self-restriction. Of those who were not doing physical activity because of concerns about their HCM, almost two-thirds said the lack of participation had a negative effect on their emotional well-being.
The results of the survey were presented on Friday at the American College of Cardiology 2013 Scientific Sessions.
Dr Day said advice published by the American College of Cardiology Foundation and the American Heart Association in 2011 stated that almost any sport at an advanced competitive level should be off-limits, with the exception of light competitive sports such as golf.
The writing group suggested it was safe for HCM patients to take part in a range of recreational sports, including cycling, modest hiking, lap swimming, doubles tennis, and bowling, but sports where participation was intense or contained elements of bursts of physical activity should be avoided.
"There is lots of uncertainty because there is very little data to support the safety of patients participating in sports and recreational activities," said Dr Day. "We know that intense exercise can trigger events, but many events occur when individuals are not doing anything at all."
Dr Day said that HCM was a very variable disease, with some patients having severe disease but others with a very low risk of a cardiac arrest. However, disease severity did not always correlate with adverse events, so the guidelines were justifiably conservative.
Dr Day said that patients referred to her clinic are often advised by other doctors not to participate in physical activity, while others are restricting themselves because they worry about dying if they exercise.
The conundrum was that in a survey 55 per cent of 110 HCM patients from the University of Michigan and 40 per cent of 930 from the Hypertrophic Cardiomyopathy Association were obese.
Dr Day said the survey underlines the importance of balancing the physical and emotional benefits of exercise with the potential risks.
"I think it's important to have a balanced conversation about exercise, to tell patients about the guidelines and where they come from," said Dr Day.
"It's a personalised approach, and we treat each patient a little bit differently."
She said that ten per cent of those surveyed are still participating in sports at a competitive recreational level. For these patients, Dr Day advises them to stay physically active throughout the week, to avoid the "weekend-warrior" syndrome (something she advises for everybody), and to be responsible, such as alerting team mates to their condition and knowing the location of automated external defibrillators.
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