Using Social Media To Study a Killer: The SCAD Research Project

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On August 17, 2011, three months after my cardiac event, Mayo Clinic posted information online about Genetic Investigations in Spontaneous Coronary Artery Dissection (SCAD), a study led by Sharonne Hayes, MD, professor of medicine in cardiovascular diseases at Mayo Clinic. I signed on immediately. At the same time, comments and questions began to pour into the website from women all over the globe. Many told their SCAD story and expressed their desire to participate in the study. The following is just one of the comments posted by a young woman. It illustrates what many SCAD survivors, myself included, were feeling at the time:

“I had a diagnosis in 4/2011 of coronary dissection and acute coronary syndrome – I had no intervention and only take daily aspirin now – I am 43 years old and am in good overall health and condition. I am wondering if my case qualifies as SCAD? I got the feeling from my cardiologist that my experience was a “fluke” and not something potentially fatal- should I be worried?”

I contacted the SCAD research study coordinator, Jill Boyum, via email ([email protected]) and soon received a request to send a copy of my coronary angiogram so that a confirmation of my SCAD diagnosis could be made. I had a copy of my angiogram on CD, so providing it wasn’t an issue. Had I not had it, Mayo also sent several release of information forms so that they would be able to obtain it themselves. From the very beginning, Mayo made every effort to make the transfer of information as simple as possible for the study participants.

Eventually, the research team notified me that my SCAD diagnosis had been confirmed and that I was eligible for the study and I also received the following, which I completed and return to Mayo as instructed:

    • A packet of helpful information about the study and the process
    • Consent and medical record release forms
    • Patient health questionnaire
    • Generalized anxiety disorder assessment
    • Survey for women with heart disease
    • The Mayo Clinic Women’s Heart Clinic Cardiovascular Risk Assessment Survey

Next, my parents and I all received blood sample collection kits via mail that we were asked to send in as part of the genetic research portion of the study.  The instructions were very clear, and Mayo provided all necessary items. We simply went to our respective physicians with the kit, had two samples of blood drawn, and mailed the samples via pre-paid overnight mail back to Mayo.

There are several aspects of the study that make it easy for patients to participate all over the globe. For the research trials themselves, one does not need to travel to Mayo in Rochester, Minn. Most of the study is accomplished via mail and electronically. To date, I have only made two trips to the post office and one trip to my doctor for the blood draw. I never once have had to run around collecting medical records. Mayo staff works directly with participants to obtain these records. The researchers are clearly committed to making the study as easy for the participants as possible.

When the first manuscript from the study was published in late December 2013 in the Journal of Cardiopulmonary Rehabilitation and Prevention, I was ecstatic. For the first time, I was able to see results from the study I was participating in. I felt as though my experience might someday truly help the medical community as well as directly impact the survival of other women like me.

“Prevalence and Predictors of Depression and Anxiety Among Survivors of Myocardial Infarction Due to Spontaneous Coronary Artery Dissection” revealed that symptoms of depression/anxiety are common in patients with myocardial infarction (MI) due to SCAD. Young women are at highest risk for development of these symptoms, particularly those with peripartum SCAD. Having suffered from depression and anxiety for most of my life, both pre- and post-SCAD, the finding certainly didn’t come as a surprise.Instead, the information was validating, and I desperately wanted to know more about the connection. I had always felt that my physicians were not as focused on this issue as I would have liked them to have been, and immediately following my SCAD, one of my first questions was whether my use of antidepressant medications was somehow the cause. Even more troubling was a new battle raging in my mind — I was experiencing the hallmark symptoms of post-traumatic stress disorder.

Now, every time I complete a portion of the data collection for the study I just might be helping someone in the future. I envision a day when a young woman won’t be suddenly struck by a heart attack after childbirth or when another young woman will know if she is at risk for SCAD, and effective preventative treatments will be available to her.

In order to learn more and to hopefully continue to raise awareness about SCAD as well as the study, I contacted Dr. Hayes directly. She was kind enough to allow me to interview her via telephone.

Cardiac Companion (CC):  Dr. Hayes, what are your thoughts on the prevalence of anxiety and depression rates in women prior to their MI? Is depression and anxiety a risk factor for SCAD?

Dr. Hayes: We know virtually nothing about this in relation to SCAD in particular, however, there are some things that we can learn from generally.We know that preexisting depression is a risk factor for developing heart disease and having a heart attack. We call it a bi-directional risk because not only may having had depression, and now we know anxiety, beforehand put you at increased risk for having a heart attack, but the flip side is that having a heart attack makes it more likely that you will have anxiety and depression and in both senses actually portend a somewhat worse outcome. Another point from a number of studies is that, younger women (younger than 60 years of age) have the highest rate of depression after a heart attack compared to both men and older women. 90% of SCAD patients are in the “young women” group, so the hypothesis is that even if it has nothing to do with the SCAD, they are at particularly high risk because of their age and demographics, so we need to be particularly mindful. My other hypothesis is that anxiety and PTSD may be even greater in SCAD patients because of the many unknowns about the outcome. If I am sitting in a room with a 55 year-old woman who had anarteriosclerotic heart attack, I have about 10 things that I can tell her that she can do that will reduce the risk of her having another one. I have precious little to offer to a SCAD patient. My hypothesis is that the SCAD patients would have a harder time alleviating their anxiety and depression because there weren’t a lot of things to actually help alleviate it. I have now in clinic seen probably 130 to 140 patients who had SCAD; I’ve probably seen more than anybody in the world and I will tell you that a number of them exhibit just classic PTSD.

CC: Do you see any correlation between the use of antidepressants and the increase risk of SCAD?

Dr. Hayes: No, we don’t, but we haven’t looked directly at that and it will be hard because the types of the antidepressants used today as opposed to the trycyclics used 30 years ago have a pretty low cardiovascular risk anyway. My recommendation has been typically that if you are sick enough with your anxiety and depression that it’s affecting your health, then it is probably worth the risk to treat it if there is effective treatment out there.

CC: Because eating disorders predominately effect women and can damage the heart, are you planning to look into the risk of having had a prior eating disorder and the risk of SCAD?

Dr. Hayes: I will tell you that within the next, I’m hoping, four to six months, all prior participants will get a follow-up questionnaire. The purpose is multi-fold – one is to give an update to participants and a thank you and to do some serial testing so we track things over time and request any new medical records and to ask questions we may not have asked the first time around, but that we have learned more and seen some patterns and we want to ask it of the whole group. I will say that our data mining so far has not been super conclusive, but has been extremely helpful in hypothesis-generating by raising new questions so that we can dive in a little a little deeper and look at what the underlying causesof SCAD might be.

For more information on SCAD, visit SCAD Research. Cardiac Companion will continue with a series of articles on SCAD, the conversation with Dr. Sharonne Hayes and the study at Mayo Clinic.

About Dr. Sharonne Hayes, MD:Dr. Hayes is associate professor of medicine and cardiology, a fellow of the American College of Cardiology and a fellow of the American Heart Association; director of diversity and inclusion. Dr. Hayes founded and practices at the Women’s Heart Clinic at Mayo Clinic (Rochester, Minn.) to meet the unique needs of women suffering from or at risk for cardiovascular disease. She actively promotes women’s cardiovascular health issues at the national, local, and institutional levels. Dr. Hayes directs the SCAD research project team at Mayo Clinic. She is co-founder and medical director of the Science and Leadership Symposium for Women with Heart Disease, which is held annually to activate and train women with heart disease to become community heart health educators, and is also medical advisor and member of the Board of Directors for WomenHeart: The National Coalition for Women with Heart Disease.

This blog is a continuation of SCAD: the Silent Killer of Young, Healthy Women

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