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WHEN we think of a patient with a heart attack, we typically think of a middle-aged man, moderately overweight, with a sedentary lifestyle. Or an older woman, with elevated blood pressure, a former smoker perhaps.
These stereotypes of the usual heart attack candidate might explain why spontaneous coronary artery dissection (SCAD) is often misdiagnosed or underdiagnosed, and why patients with SCAD feel so confused, anxious, misunderstood, and abandoned by the health system.
Findings of our qualitative study of survivors of SCAD, published last month in the international journal PLOS ONE, outline these and other psychosocial impacts of this challenging condition.
What is SCAD?
SCAD is an increasingly recognised cause of acute coronary syndrome and sudden cardiac death in people without classic cardiac risk factors. Unlike acute myocardial infarction (AMI) due to atherosclerosis, SCAD-AMI is non-atherosclerotic and occurs when a coronary vessel develops a tear or haematoma causing coronary artery obstruction. This arterial obstruction results in heart attack, arrhythmias, or sudden death. SCAD is a relatively rare condition, accounting for 1-4% of cases of acute coronary syndrome overall.
SCAD predominantly affects younger women, accounting for up to 35% of AMIs in women aged 50 years and under. It is the most common cause of pregnancy-related AMI, most often occurring in the peripartum period. SCAD is also associated with underlying systemic vasculopathies such as fibromuscular dysplasia, connective tissue disorders, migraine, and inflammatory disorders. Emotional stress and physical exertion often precipitate acute SCAD events. Hospital readmission and recurrence are more common after SCAD than following typical AMI.
Due to its relative rarity and propensity to occur in younger healthy women, SCAD is commonly misdiagnosed or dismissed. Due to its sudden onset and high re-event rate, SCAD carries a large psychosocial burden, which is exacerbated by health professionals’ lack of awareness of the condition and its management.
Psychosocial impacts of SCAD
Our qualitative study involved 30 SCAD survivors, mostly women (n = 27), with an average age of 52 years, although some participants were in their early 30s. All had had their SCAD in the preceding 12 months. They participated in focus group discussions about how they coped during their SCAD diagnosis, hospitalisation and early treatment, and during the first year of recovery.
“Lack of information” emerged as the overriding theme, highlighting the way in which health professionals’ lack of knowledge about and understanding of SCAD results in insufficient provision of information and support to SCAD survivors. Among the most challenging emotional impacts for SCAD survivors was “confusion and uncertainty” about the condition, including its diagnosis, causes, treatment options, guidelines regarding return to daily living and physical activity, prognosis, and risk of re-events. Emotionally, SCAD survivors felt anxiety, fear and vulnerability; loss and grief; isolation and loneliness; invalidation and abandonment; and frustration and depression.
Lack of awareness and understanding of SCAD in the medical profession
Study participants talked extensively about how their treating health professionals lacked clear knowledge and understanding of SCAD. This included those working in hospitals, as well as the cardiologists and GPs who managed them after discharge.
As we noted in our article:
“Participants stated that many health professionals ‘had never heard of SCAD’ and often ‘knew nothing about it’, and … that health professionals were not aware of differences between SCAD-related heart attack and typical atherosclerotic heart attack.”
SCAD survivors were surprised and frustrated about this lack of clarity about SCAD:
“The people in the emergency department (ED), even the ED physicians and senior nurses, they had not heard of it before. I was surprised about the knowledge deficits.”
“There’s a lot of uncertainty, in what should happen, what shouldn’t happen, what is or isn’t the treatment. There seems to be no continuity … My GP didn’t even know what a SCAD was.”
“The advice they give you is geared towards normal heart attacks, about improving lifestyle. The information is not targeted well at all.”
Due to medical professionals’ knowledge deficits, SCAD survivors are often left feeling unsupported, invalidated and abandoned, and wondering whether they are receiving the best care possible:
“The medical profession knows so little about it. So, when you have a SCAD, you’re not treated right. You want to know what happened, what to do next, and there’s no-one there to give you the information. You have to go and look for it yourself.”
“My GP said: ‘what’s a SCAD?’ and I had to explain it to him. And he said: ‘Oh, it’s not a proper heart attack is it? You didn’t really have a heart attack, did you?’ You don’t feel like you’re getting the best care, or the best advice.”
“It’s the feeling that the medical people who you’re talking to aren’t across what SCAD is and what its effects are. I’m not blaming them for that because obviously it hasn’t been greatly researched until recently, but it does add to the anxiety for sure.”
Why is SCAD so difficult for patients?
There are several features of SCAD that make it a particularly challenging and stressful condition for SCAD survivors.
- It occurs “out of the blue”. Most SCAD patients have few traditional cardiovascular disease (CVD) risk factors and few have any prior warning about the possibility of SCAD. They and their families are not prepared for what follows.
- It is relatively rare. SCAD accounts for only 1–4% of acute coronary syndrome cases overall and can be regarded as an uncommon condition. This means that SCAD survivors are isolated and lack opportunities for contact with and support from others in the same position.
- It is poorly understood. The lack of understanding of SCAD means survivors are left to navigate their recovery alone with relatively little professional support. They often receive contradictory advice from their treating health professionals.
- Its optimal management differs from that of traditional AMI. In general, typical medical treatments such as statins and interventions such as percutaneous coronary intervention are either not required or are contraindicated. In the absence of atherosclerosis and traditional CVD risk factors, SCAD is not suited to traditional CVD lifestyle management approaches. Despite this, “SCAD continues to be … managed as atherosclerotic acute coronary syndrome, which may harm patients with SCAD”.
- There is a lack of evidence for benefit or harm of physical activity. As physical exertion is a documented trigger for SCAD, there is a lack of clear guidelines for or limits to physical activity. This leaves many previously active SCAD survivors frustrated and confused about returning to previous levels of activity.
- It has a high recurrence rate. Major adverse cardiac events occur in 10–30% of SCAD survivors within 2–3 years, mostly due to recurrent SCAD-AMI. The recurrence rate reaches up to 37% by 5–7 years, and approximately 50% by 10 years. This high recurrence is of great concern to both patients and their health care providers.
Want to find out more about SCAD?
Further results from our study on the psychosocial impacts of SCAD are presented in Murphy and colleagues (2022). More information about the causes, correlates and consequences of SCAD are available in our earlier publications: Graham and colleagues (2018), McGrath-Cadell and colleagues (2016), Iismaa and colleagues (2021), and Tarr and colleagues (2022). Information from the American Heart Association on the causes, clinical course, treatment options, and outcomes of SCAD are outlined in Hayes and colleagues (2018). To find out more about SCAD, go to the Victor Chang Cardiac Research Institute website at https://www.victorchang.edu.au/scad
Dr Barbara Murphy is from the Australian Centre for Heart Health in Melbourne, and the Melbourne School of Psychological Sciences at the University of Melbourne.
Professor Robert Graham is from the Victor Chang Cardiac Research Institute in Sydney, and St Vincent’s Clinical School at the University of New South Wales.
Dr Michelle Rogerson is from the Australian Centre for Heart Health in Melbourne.
Dr Stephanie Hesselson is from the Victor Chang Cardiac Research Institute in Sydney.
Dr Siiri Iismaa is from the Victor Chang Cardiac Research Institute in Sydney, and St Vincent’s Clinical School at the University of New South Wales.
Professor Alun Jackson is from the Australian Centre for Heart Health in Melbourne, and the Melbourne School of Psychological Sciences at the University of Melbourne.
The statements or opinions expressed in this article reflect the views of the authors and do not necessarily represent the official policy of the AMA, the MJA or InSight+ unless so stated.
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If you would like to submit an article for consideration, send a Word version to mjainsight-editor@ampco.com.au.
I had a SCAD on holiday in Switzerland in July 2022. Thankfully the young cardiologist was unhappy with my symptoms, age and no cvd markers and referred me for a coronary angiography. Coming back to NZ it was a different story. My GP knew nothing about the condition and my cardiologist is only giving me vague answers. I am an osteopath and part time farmer so my work is very physical. No one is prepared to say whether I should still be doing these things or not, so I have been. But I am worried about a reoccurrence.
1. Anonymous says:
October 20, 2022 at 12:54 pm
I had similar experience to Scad treatment in that I was admitted to hospital after experiencing chest pain after physical and emotional trauma. I was in hospital for two days and was told I was ok to go home however shortly after being told that a Doctor came and said they wanted to keep me in for further in tests.
The end result was to confirm that I had suffered an event by the name of Takotsubo, apparently this event is also not widely known ! Just mentioning this for any comments please.
Response by Prof Robert Graham, on behalf of the authors: Thank you for this comment. Yes, Takotsubo’s (also known colloquially as “broken heart syndrome”) is another somewhat uncommon form of heart disease that can present like a regular heart attack. It also occurs predominantly in women, but on average they are a decade older than SCAD patients.
2. Anonymous says:
October 20, 2022 at 8:43 am
Great articulate, I am a scad survivor 3 years now. Have just recently return to hospital with chest pain and no one had hear about scad. Waiting to see my cardiologist. I was 53 at the time and it has turned my life upside down with the lack of answers & understanding. Mentally struggling with this. Thank you.
Response by Prof Robert Graham, on behalf of the authors: Sorry to hear about you continuing problems. Hopefully, you cardiologist can help.
3. Susanne Oldfield says:
October 18, 2022 at 9:17 pm
When I attended hospital with chest pain extending down the left arm, round into my back and up my neck to my jaw the staff suggested I had pulled a muscle. They did take bloods but while waiting decided to send me for an x ray, on foot. I was fast walked down to the x ray department clutching my chest but too polite to object. I was then made to stand and wait for my x ray. When I finished I was greeted by a wheelchair because the blood tests had of course revealed my troponin levels. I agree with others that it is arrogant and lazy to plead that there is no need for emergency staff to be educated about SCAD. Doctors need to be aware of the risk and act appropriately. It is beyond insulting that a doctor would assume a woman presenting with these symptoms had pulled a muscle.
Response by Prof Robert Graham, on behalf of the authors: Thank you for this comment, which again reiterates the need for frontline medical personnel to know about SCAD and its management.
4. Anonymous says:
October 18, 2022 at 2:17 pm
I was having a stent inserted when the artery split. A second stent was inserted and the artery split again. Third time lucky stenting was successful. It was incredibly painful and distressing. As this is a spontaneous event I don’t have any idea if it will occur again.
Response by Prof Robert Graham, on behalf of the authors: Thank you. Very unfortunate, but glad you’re now OK. We have now leaned that in most cases SCAD should be treated conservatively, without stenting, because of the very complications you mention.
5. Anonymous says:
October 18, 2022 at 12:34 pm
After my Stemi scad, I wad told there chance of recurrence was 10-15%. The article suggests this increases significantly over time. There is indeed much conflicting advice particularly around exercise and this be anxiety inducing when trying to embark on a new way of doing things. Medication requirements post scad are also unclear, eg: Is aspirin recommended for life? My cardiologist couldn’t give clear guidance. How long should a scad patient take double antiplatelet therapy? Again, only vague direction from cardiologist.
Response by Prof Robert Graham, on behalf of the authors: You’re absolutely correct, we still have much to learn about the causes and management of SCAD. Happy to advise regarding the issues you raise. You can contact me directly at the Victor Chang Cardiac Research Institute.
6. Anonymous says:
October 18, 2022 at 11:19 am
While I’m grateful my cardiologist was knowledgeable regarding SCAD, I presented in cardiogenic shock after a witnessed arrest at home and 23 minutes to ROSC, so there was really not much controversy on how to treat. While I received a DES to LAD, which can be construed as somewhat controversial in setting of SCAD, I’m deeply grateful to have survived and even more so because I received hypothermia protocol post arrest. I’m convinced that this therapy, Arctic Sun, saved my brain, which to me equates to life. Sadly only one hospital system in our mid-large size metropolis offers this routinely to arrest survivors. I have ruled in for FMD but thankfully genetic testing was negative for Ehlers-Danlos. You never think this could happen, but it does, and it changes perspective forever.
Response by Prof Robert Graham, on behalf of the authors: Thank you for this comment. Pleased to hear you’re now on the mend and didn’t suffer any brain injury.
7. Anonymous says:
October 18, 2022 at 7:39 am
Thank you for this study!
My local ER does not have resources for an angiogram, so they said I was having a panic attack, told me to make better life choices and sent me home doped up on pain meds. 2 days later I was dying, and taken by ambulance to a larger ER where they diagnosed the SCAD and saved my life.
Response by Prof Robert Graham, on behalf of the authors: Thank you. Further emphasises why all frontline medical personnel need to know about SCAD.
8. Doreen McCarthy 2 X SCAD survivor says:
October 18, 2022 at 7:33 am
Yes ED doctors don’t treat or diagnose SCAD but they do dismiss younger women when they come in and complain about typical heart attack symptoms. Many SCAD survivors were told their symptoms were “anxiety” attacks as they are “too young” or “too healthy” to be having a heart attack and they are sent home to die or come back with more extreme damage. Therefore it is EXTREMELY important for emergency room doctor to be aware of this. Repeat troponin levels are one way to help diagnose whether it is heart related or something else. Then the patient can be admitted and have the angiogram done.
Response by Prof Robert Graham, on behalf of the authors: Agree. Thank you for raising these issues.
.
9. Anonymous says:
October 18, 2022 at 7:28 am
I reply to the person who said knowledge is irrelevant to ER setting. When I presented in ER my symptoms needed to be seen as a possible MI esp when my troponin results came back elevated and my symptoms descriptions included chest tearing, nausea, body temp changes and feeling horrendous. But because ER staff had never heard of SCAD there was no call for cardiology or cardiac tests, no immediate reaction to raised troponin. Instead I waited a week to be diagnosed and that involved two more heart attacks and a cardiac arrest. Their ignorance nearly cost me my life and my children their mother.. so please don’t be so insulting to those of us who have nearly died of SCAD through medical ignorance to say that there’s no need for ER medics to know about it…. it’s at best a lazy approach to your professional responsibility… and an offense to any patient meeting you in ER that on hearing about something like this you are not showing great appreciation to Dr. Barbara Murphy and others for their attempts to enlighten you rather than excuse medical ignorance. PS Thank you to the wonderful researchers who put their time, effort and energy into this research
Response by Prof Robert Graham, on behalf of the authors: Sorry to hear about your SCADs. You highlight very poignantly why it is so important for all frontline medical personnel to know about SCAD heart attacks.
10. Sue Ieraci says:
October 17, 2022 at 6:22 pm
The anonymous comment above is correct. It is actually interventional cardiology that focuses too much on “opening the artery”. Emergency Physicians and GPs look for evidence of ischaemia/infarction. We already know that the old pattern of the single “widow-maker” major vessel occlusion is becoming less common, especially with much lower smoking rates. There are now far more elderly women with anatomically small arteries and degenerative disease who are not amenable to interventional procedures. Emergency Physicians and GPs are not offering percutaneous coronary interventions. If, as the authors say, ” “SCAD continues to be … managed as atherosclerotic acute coronary syndrome, which may harm patients with SCAD”., are cardiologists up on this topic?
Response by Prof Robert Graham, on behalf of the authors: Thank you for this insightful comment. Your point is well taken and unfortunately, some cardiologists, including interventional cardiologists, are not sufficiently familiar with SCAD heart attacks and their management. Hence, the need for us to continue to educate.
11. Anonymous says:
October 17, 2022 at 9:14 am
It’s all very well to criticise Emergency physicians for not knowing about a rare condition but the fact is it is not possible to diagnose the precise cause of a heart attack ( atherosclerosis versus SCAD ) on history, physical examination, ECGs or blood tests. Surely an angiogram is required. Hence it is irrelevant in an Emergency department or general practice setting.
Response by Prof Robert Graham, on behalf of the authors: I find this comment very unfortunate. Even though one can’t diagnose the precise cause of a heart attack by history or physical examination, if one doesn’t know about SCAD heart attacks and that not uncommonly people presenting with a SCAD are relatively young, otherwise healthy women, who often have few if any traditional risk factors, may present with atypical symptoms (eg indigestion, shoulder or back pain etc) and may not have ECG changes of myocardial infarction, then the diagnosis will be missed, and undoubtedly some patients will be discharged home and some will succumb. This is not acceptable and for this reason ED physicians and GPs need to know about SCAD heart attacks, even though SCAD is relatively uncommon.
I had similar experience to Scad treatment in that I was admitted to hospital after experiencing chest pain after physical and emotional trauma.
I was in hospital for two days and was told I was ok to go home however shortly after being told
that a Doctor came and said they wanted to keep me in for further in tests.
The end result was to confirm that I had suffered an event by the ame of Takotsubo, apparently this event is also not widely known !
Just mentioning this for any comments please.
Great articulate, I am a scad survivor 3 years now. Have just recently return to hospital with chest pain and no one had hear about scad. Waiting to see my cardiologist. I was 53 at the time and it has turned my life upside down with the lack of answers & understanding. Mentally struggling with this. Thank you.
When I attended hospital with chest pain extending down the left arm, round into my back and up my neck to my jaw the staff suggested I had pulled a muscle. They did take bloods but while waiting decided to send me for an x ray, on foot. I was fast walked down to the x ray department clutching my chest but too polite to object. I was then made to stand and wait for my x ray. When I finished I was greeted by a wheelchair because the blood tests had of course revealed my troponin levels. I agree with others that it is arrogant and lazy to plead that there is no need for emergency staff to be educated about SCAD. Doctors need to be aware of the risk and act appropriately. It is beyond insulting that a doctor would assume a woman presenting with these symptoms had pulled a muscle.
I was having a stent inserted when the artery split. A second stent was inserted and the artery split again. Third time lucky stenting was successful.
It was incredibly painful and distressing. As this is a spontaneous event I don’t have any idea if it will occur again.
After my Stemi scad, I wad told there chance of recurrence was 10-15%. The article suggests this increases significantly over time. There is indeed much conflicting advice particularly around exercise and this be anxiety inducing when trying to embark on a new way of doing things. Medication requirements post scad are also unclear, eg: Is aspirin recommended for life? My cardiologist couldn’t give clear guidance. How long should a scad patient take double antiplatelet therapy? Again, only vauge direction from cardiologist.
While I’m grateful my cardiologist was knowledgeable regarding SCAD, I presented in cardiogenic shock after a witnessed arrest at home and 23 minutes to ROSC, so there was really not much controversy on how to treat. While I received a DES to LAD, which can be construed as somewhat controversial in setting of SCAD, I’m deeply grateful to have survived and even more so because I received hypothermia protocol post arrest. I’m convinced that this therapy, Arctic Sun, saved my brain, which to me equates to life. Sadly only one hospital system in our mid-large size metropolis offers this routinely to arrest survivors. I have ruled in for FMD but thankfully genetic testing was negative for Ehlers-Danlos. You never think this could happen, but it does, and it changes perspective forever.
Thank you for this study!
My local ER does not have resouces for an angiogram, so they said I was having a panic attack, told me to make better life choices and sent me home doped up on pain meds.
2 days later I was dying, and taken by ambulance to a larger ER where they diagnosed the SCAD and saved my life.
Yes ED doctors don’t treat or diagnose SCAD but they do dismiss younger women when they come in and complain about typical heart attack symptoms. Many SCAD survivors were told their symptoms were “anxiety” attacks as they are “too young” or “too healthy” to be having a heart attack and they are sent home to die or come back with more extreme damage. Therefore it is EXTREMELY important for emergency room doctor to be aware of this. Repeat troponin levels are one way to help diagnose whether it is heart related or something else. Then the patient can be admitted and have the angiogram done.
I reply to the person who said knowkedge is irrelevant to ER setting. When I presented in ER my symptoms needed to be seen as a possible MI esp when my troponin results came back elevated and my symptoms descriptions included chest tearing, nausea, body temp changes and feeling horrendous. But because ER staff had never heard of SCAD there was no call for cardiology or cardiac tests, no immediate reaction to raised troponin. Instead I waited a week to be diagnosed and that involved two more heart attacks and a cardiac arrest. Their ignorance nearly cost me my life and my children their mother.. so please don’t be so insulting to those of us who have nearly died of SCAD through medical ignorance to say that there’s no need for ER medics to know about it…. it’s at best a lazy approach to your professional responsibility… and an offence to any patient meeting you in ER that on hearing about something like this you are not showing great appreciation to Dr. Barbara Murphy and others for their attempts to enlighten you rather than excuse medical ignorance. PS Thank you to the wonderful researchers who put their time, effort and energy into this research
The anonymous comment above is correct. It is actually interventional cardiology that focuses too much on “opening the artery”. Emergency Physicians and GPs look for evidence of ischaemia/infarction. We already know that the old pattern of the single “widow-maker” major vessel occlusion is becoming less common, especially with much lower smoking rates. There are now far more elderly women with anatomically small arteries and degenerative disease who are not amenable to interventional procedures.
Emergency Physicians and GPs are not offering percutaneous coronary interventions. If, as the authors say, ” “SCAD continues to be … managed as atherosclerotic acute coronary syndrome, which may harm patients with SCAD”., are cardiologists up on this topic?
It’s all very well to criticise Emergency physicians for not knowing about a rare condition but the fact is it is not possible to diagnose the precise cause of a heart attack ( atherosclerosis versus SCAD ) on history, physical examination, ECGs or blood tests. Surely an angiogram is required. Hence it is irrelevant in an Emergency department or general practice setting.