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.

1. 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.
2. 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.
3. 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.
4. 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”.
5. 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.
6. 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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