Atrial Fibrillation (AFib) | Q&A
What It's Like to Join an Atrial Fibrillation Clinical Trial
The Decision to Join a Clinical Trial
Dale Kaiser, a climate scientist at the Oak Ridge National Laboratory in Tennessee, qualified for an afib clinical trial using a new type of ablation procedure. The trial compares an ablation technique that allows doctors to see inside the heart while using laser energy instead of radiofrequency energy. To qualify, participants had to have intermittent atrial fib, called paroxysmal afib. They also have failed to have their symptoms controlled by anti-arrhythmic drugs.
“I was diagnosed in 1990, when I was 34 years old. My symptoms were shortness of breath and a fluttering feeling in the chest," says Kaiser. "I never had any true discomfort, but it did impact being able to exercise, do physical work, and feel at my best with a clear head and normal energy.”
Dale’s symptoms were better with medication but not completely controlled. “Frequency could vary from several times a month to once every several months. Episodes would rarely be less than at least a couple of hours, and oftentimes be more like 24. Somewhere in between was most common,” he says.
Dale became interested in an ablation clinical trial because he wanted to avoid having more invasive afib surgery and ending up with a pacemaker sometime down the road.
“My longtime cardiologist told me about the trial. I understood that the chance of catheter ablation success is much lower if one has gone into persistent afib. What I'm hoping to avoid is the ‘nuclear option,’ as one of the doctors put it. I thought the trial offered more potential for success,” says Kaiser.
He began the process by contacting the closest site offering the trial, which was the University of Alabama at Birmingham, UAB, four hours away. After some phone calls and emails, he traveled down for a pre-trial interview and was ultimately accepted.
Since this trial compares a new type of ablation to an old type of ablation, patients do not know which treatment they are getting — Kaiser still does not know which ablation treatment he had.
“I had a fifty-fifty shot at the new laser catheter that has already been adopted in Europe and Australia with good success. Even with the older catheter, I knew that UAB was an experienced, high-volume center. It became clear to me, after much thought, that I should try this,” he says, looking back.
“The risks were laid out in detail in the waiver I signed; they were not verbalized that much, as they expected me to read about them. Of course, no guarantees of success; they did say that the new catheter had attained higher success rates than the approved catheter in earlier phases of the trial. Beyond that, I did lots of homework with many Web sites. It was stated that no matter what catheter was used, at least one repeat procedure could be needed down the road in case they missed a spot,” says Kaiser.
Living With Atrial Fibrillation After the Trial
Kaiser was asleep during the procedure, which was done on a Monday. He was up and walking that afternoon and his wife was driving him home the next day. By Thursday, he was back at his desk in Oak Ridge.
“The UAB Hospital and staff were great. The nurses and doctors made me feel well cared for. They always have time for questions over the phone,” says Kaiser.
Kaiser has been back for evaluations. So far, the experience had been positive and seems to be having good results.
“Recovery from procedure was not difficult. I took ibuprofen for a few weeks. I do occasionally have some early beats but nothing debilitating, and hopefully this will not be an issue going forward. Almost 3 months post procedure, I do notice that I get winded easier, but in general, I feel good and am hopeful,” says Kaiser.
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How to Find an Afib Clinical Trial
If you are living with atrial fibrillation or another type of heart disease and you think you might consider a clinical trial, talk to your doctor. Clinical trials are usually done at top medical centers so you should be in excellent hands. You will have the opportunity to improve your own health and to make a contribution that other people can benefit from.
“To find clinical trials near you that are related to atrial fibrillation, go to ClinicalTrials.gov and search using atrial fibrillation and your location," says True Hills. "Look for those that are recruiting and click on the link, where you will find a wealth of information about the trial, including those who are eligible and those who are not, and the study locations around the United States and even around the globe. Each study location provides the location contact information for connecting with that location.”
Tips for Choosing an Atrial Fibrillation Trial
True Hills offers these tips when considering a clinical trial:
- Look for doctors with a good track record of results to increase your confidence in your decision to participate in a clinical trial.
- Ask about time commitments to participate in the full course of the trial and whether additional monitoring is involved beyond the normal monitoring (you’ll want to know if your insurance will cover that).
- Know that through your participation you are helping others to know their best course of treatment for afib.
- Seek out opinions and insight from others who have participated in clinical trials. A good place to do so is at a forum, such as the StopAfib discussion forum.
Participating in an afib clinical trial offers you the opportunity to possibly improve your own health and make a contribution that can benefit other people.
Video: Catheter Ablation For Atrial Fibrillation (AFIB)
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