I was recently asked a seemingly simple question about differences in how women with atrial fibrillation (AF) are treated.
The questioner was referring to this large AF-ablation study published a year ago in the Heart Rhythm Journal. Researchers at St David’s Hospital in Austin, TX reported striking differences in the outcomes and complications of more than 3200 women that underwent AF-Ablation at 5 different centers.
Here’s a highlight of the differences outlined in this study:
- Women underwent AF ablation 5 times less often than men.
- AF ablation was less successful in women.
- Women were older than men at the time of AF ablation.
- Women had failed more drugs than men before referral for ablation.
- Women had later stage AF at the time they were referred for ablation.
- Women were more likely to have atypical firing-sites (outside the pulmonary veins) for AF.
- Women had more bleeding complications after ablation.
These data are consistent with other well known facts about heart disease in women.
- Women with AF are at greater risk for stroke than men. In fact, the association is so strong, European investigators give female gender a full point in their more detailed CHADS2-VASc score for predicting stroke in AF. (A concise summary on CHADS2-VASc is here, on TheHeart.org.)
- Women are more susceptible to AF-drugs, especially those that increase the time it takes the heart to relax (QT-prolonging drugs). In other words, the electrical properties of the heart cell often vary by gender.
- The most common form of SVT (Supraventricular Tachycardia), AV Nodal Reentry (AVNRT) occurs more often in women.
- Women are under-referred for other innovative cardiac technologies, like defibrillators, bypass surgery and cardiac catheterization.
So what was that simple question?
What’s the explanation for these striking treatment differences in women with AF?
The researchers from Austin offer only speculation. They suggested that women may present later in the course of their disease because they are more stoic about their symptoms. Or, women may have fewer AF-ablations because they are less likely to agree to invasive therapy. They even cited child-care responsibilities as a possibility.
Famous author and WSJ columnist, Peggy Noonan, writing with Melanie True Hills, editor of the well known AF-website, StopAF.org weigh in with another possible explanation:
“I think today it’s more often an issue of differing communication styles between doctors and women patients…
Doctors are trained to listen for facts, but as women we may be “genetically programmed” to communicate with more emotion and feelings that give context and richness to our messages. That can create miscommunication as doctors may not hear or understand all of what we’re saying. I often hear a common refrain of “my doctor didn’t listen to me.” It may actually be a case of the doctor hearing the words, but not the whole message.”
I can’t say that I have any better explanations. I don’t think anyone knows for sure.
But I can say that I haven’t noticed similar patterns in my AF practice. (Neither did two other private practice AF-ablation colleagues that I asked before writing this post.) That doesn’t mean I don’t believe their data. I do. It appears to be clean, unbiased reporting of what they found.
In our real-world AF practice, however, it hasn’t been obvious that women are under-represented as ablation candidates. I also have not noticed that our ablation success rates are lower, or complication rates higher in women. And, I hear women with AF describe equal degrees of breathlessness, fatigue and quivering as men.
The caveat here, of course, is that real-world AF doctors do not have at their disposal an army of foundation-supported research associates. We have our reading of the literature, and our experiences with patients that we have ablated (or not ablated.)
As the treasure of ablating AF–relief of symptoms without medicine–gets spread to more patients, real world data from national registries, like SAFARI, will add greatly to our knowledge base. Since the 1990s, heart rhythm doctors often use the expression, learning while burning. Yes, in AF, catheter ablation continues to teach us about this amazingly complex disease. The learning is at a fever pitch at the moment.
For now, I would offer this practical advice to women with AF:
- Talk to your doctor clearly about your symptoms. Your AF doctor needs to know the degree to which AF symptoms disrupt your quality of life. Symptoms are one of the major factors that determine whether AF ablation is recommended.
- Women should know that AF ablation works best when done early in the natural history of the disease. They should urge to be referred to an AF doctor earlier in the course of AF: when AF is still occurring intermittently, rather than permanently, for example.
- Women might remind their AF-doctor to look carefully for sites of triggering outside the PV areas. In other words, if AF is triggered from Kansas, an electric fence around the coast lines won’t do any good. (We do this as a matter of routine in all patients.)
- Women should seek out an enlightened, experienced AF-doctor who listens to you, and isn’t upset if you bring this kind of ‘e-info’ to the visit.
As a learner, I am interested in the opinions of others. Please feel free to offer them in the comments section.
JMM
Kent says
John, have you kept a database of your AF ablations? I’m planning to do this, I have all of them, just need to create the database. Also want to update them as I do monitoring down the road to see what kind of intermediate and long term success rates might be…
I think that’s really the only way to know what biases are there. I’m sure if you asked the guys in Austin or any EP (or cardiologist for that matter) they probably wouldn’t suspect such gender bias in their practice, yet study after study suggests it’s there. So somewhere in there is a disconnect…
Dr John says
Hey Kent,
Great point.
I agree with you about the database. I am looking into how feasible this will be for me to do.
Mellanie True Hills says
Dr. Mandrola,
I think you could guess that I would weigh in on this subject as it concerns me greatly.
First off, the disconnect is generally not with you and your fellow EPs – the problem is that women often aren’t even getting to EPs in the first place, at least not until later than men do. In fact, in many cases, they aren’t even getting diagnosed with afib.
Here are some data points from my speech at the Western AF Symposium just over a week ago. For it, I got input from hundreds and hundreds of afib community members, in addition to what I hear every day. Also, when I do speeches for hospital-sponsored afib patient events, I talk with patients, and have talked with thousands of them through these events. So much of the following data comes from the afib community, not just from me.
1) It takes an average of 1.7 years from when symptoms are reported until afib is diagnosed, leaving patients vulnerable, according to the AF STAT coalition’s “Out of Sync Survey”. And AF AWARE in Europe found an average of 2.6 years.
2) Many members of the afib community weren’t diagnosed until after a stroke, or two, or even three, and some didn’t make it. This failure to diagnose seems more common among women because doctors often blame their symptoms on stress, lack of sleep, or panic attacks.
3) Patients told me that doctors don’t take them or their symptoms seriously, and once diagnosed, their doctors don’t understand the fear of living with afib.
4) Some patients told me that their doctors said, “You’re just a hysterical female.” Well, women are open about feelings, but they and their symptoms are often dismissed, and thus they don’t get treated for afib as quickly. In fact, afib is different for women, especially related to hormonal cycles.
Because women aren’t diagnosed as quickly, and because they are not listened to, they often don’t get referred for treatment or procedures as quickly either. As a result, my guess is that an EP typically sees about 2/3 men and 1/3 women in his or her practice (maybe as much as 60:40, though it’s rarely that high in clinical trials or studies). I’d also guess that women patients are older, and their afib is farther advanced, by the time they get to see an EP. The study out of Austin seems to confirm that.
And because 60% of stroke deaths are women, many are lost before they ever get to you. That’s why CHA2DS2-VASc is such a welcome relief because we finally have a tool that doesn’t understate women’s greater stroke risk (like CHADS2 does).
So please keep up the good work of communicating effectively with your women patients. And please continue to help spread the word that women seem to be underdiagnosed and undertreated, and that once diagnosed, they need to see a specialist to bring their afib under control and avoid strokes.
Thanks for the good work you’re doing.
Mellanie True Hills
StopAfib.org
Dr John says
MTH,
Thanks for taking the time to write such a comprehensive comment.
You are doing great work for the AF community. AF is a disease so vast and diverse that one of its most effective treatments is information. StopAF.org does AF information very well.
You are right about the hierarchy of AF referrals. As an AF-specialist, I can only see those patients sent to me. Very few of my patients with arrhythmias are de novo AF patients.
I would also like to add a couple of observations about your numbered comments. On your #3: Legend has it that being a patient makes one a better doctor. I know from personal experience how bad AF can make you feel. Your power plummets and your breathing gets labored, and the worst part is that after it happens you feel bad for the rest of the day. (My wife tells me that I don’t need an ECG every time my heart is irregular.)
On your point #4: One thing I have learned from seeing patients whose AF has been successfully ablated is that their hysteria, and hyper-ness diminish substantially when they are in sinus rhythm. The high maintenance patient becomes low maintenance without the burden of AF.
Finally, I recently remember seeing a women (after her successful ablation) that suffered from terrible AF-symptoms. But before she was referred to me, her doctors spent thousands of dollars in medical testing because they had trouble believing that AF-symptoms can be so hard on people. After her AF was gone she offered this…”Doc, I don’t use that inhaler anymore after my AF-ablation…I don’t think my asthma was the problem, I think it was the AF.”
Warmest Regards,
John
emmy says
Probably someone has said this more eloquently than I could. Women aren’t more stoic than men. In fact we are more likely to approach our doctors about a problem. But that is part of the problem. Because we are always there with the changes we are going through, the issues are seen as us complaining about simplistic and hypochrondrial illness’. So if a woman does complain of a symptom that could suggest A-fib, her primary is less likely to refer her than her husband if he presented with the same symptoms.
I get the attitude all the time when I’m dealing with medical professionals regarding drugs that prolong the QT interval. “Oh, but you are female. You don’t need to worry about heart disease.” And they don’t even seem to notice that I know they are full of it when they give me that argument.
Dr John says
Thanks for saying Emmy. I think you said it well.
Allison says
Some, not all, but many, doctors have trouble seeing past the uterus. Everything must be related to a woman’s hormones. Then, it must be menopause. Then they start saying “well given your age…… blah de blah de blah.” I have more hope for a new generation of doctors, but I have to say the reporting of gender differences in heart treatment comes as no surprise to me and friends my age. I am fortunate in that my insurance allows for self-referral, which I did. And now I am much better.
Dr John says
Allison,
Thanks for your input.
One does not have to be a master of the obvious to know that men and women experience disease differently. These variations add to the many other challenges of doctoring. That’s why I like it so much.