Folks using online message boards to learn more about their heart implant should take any advice they come across with a grain of salt.
Researchers report it’s as likely as not the guidance they find will be bogus.
About half of the advice related to heart implants found on an anonymous online board was either erroneous, controversial or not specific enough for people to know whether it would apply to them, said lead researcher Christopher Knoepke, an instructor of cardiology at the University of Colorado in Denver.
“Patients should be advised that discussions on these online message boards can provide some good, basic information, but more complicated and in-depth advice may be problematic,” Knoepke said.
For the study, Knoepke and his colleagues reviewed two years’ worth of messages on an anonymous message board regarding implanted cardiac defibrillators (ICDs).
ICDs monitor a person’s heart rhythms and deliver a correcting shock if they detect a dangerous rhythm.
The researchers then assessed each piece of medical advice.
About half of the advice offered on the message board was deemed generally appropriate, the researchers said.
As for the other half:
- About 24 percent was simply bad advice that wouldn’t help most patients.
- About 6 percent was controversial advice, where even experts would disagree whether it was a good idea or not.
- About 20 percent of the advice did not provide sufficient context; there was no way for a person to know whether the advice would be good for them or not.
Some of the bad advice included recommendations for specific vitamins and supplements, with no noting of potential interactions with heart medications, Knoepke said.
In other instances, risks associated with the devices were understated. For example, the researchers found advice that underplayed the risks of infection related to having the ICDs’ electrical leads either implanted or removed, Knoepke said.
But there also were instances where the risks of having an ICD were overstated, such as the effects of small electrical appliances on the function of the devices, he said.
“Somebody recommended that an individual not use an electric shaver, or not get a tattoo near the device, because there would be a small electromagnetic field around the tattoo needle,” Knoepke said.
American Heart Association spokesman Dr. Michael Ho said this sort of bad information could potentially dissuade a heart patient from agreeing to a lifesaving ICD.
On the other hand, Ho said he is reluctant to rule out these message boards as a source of patient information.
“There potentially is benefit to these chat rooms as well, because patients can share their experiences of having an implant,” said Ho, a professor of cardiology with the University of Colorado School of Medicine. He was not part of the study.
“They may learn about new technology or things that other patients have done to change the way they live with having an ICD,” Ho said.
Knoepke agreed, saying that patients often take much heart from knowing “there are communities of people out there who are like you and want to share their experience and provide information and support.”
However, patients should still read these boards with a critical eye, both Knoepke and Ho said.
More general information about ICDs usually can be trusted, Knoepke said.
“The less it has to do with you as an individual patient, the more likely it is to be good advice,” Knoepke said.
People with specific questions — about medications, pacing parameters, device programming or particular procedures — would do best to seek answers from their doctor, Knoepke said.
Patients also can run message board advice past their doctor, or check it against websites from reputable sources such as the American Heart Association or the American College of Cardiology, Ho said.
“I think it’s important for patients to get information from multiple sources, to see if the information converges for them,” he said.
The findings were to be presented Saturday at an American Heart Association meeting, in Arlington, Va. Research presented at meetings is considered preliminary until published in a peer-reviewed journal.
The American Academy of Family Physicians has more about ICDs.
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