Overarching theme—lack of information.

The major and overarching theme that emerged was lack of information about SCAD, including information related to its cause, management and prognosis. Participants talked extensively about lack of knowledge about SCAD amongst their treating health professionals, from the time of presentation at the hospital emergency department through to later consultations with cardiologists and general practitioners (GPs). Participants stated that many health professionals ‘had never heard of SCAD’ and often ‘knew nothing about it’, and commented that health professionals were not aware of differences between SCAD-related heart attack and typical atherosclerotic heart attack:

“the health professionals have no idea what it is. No-one knows anything about it. They say ‘oh it’s a heart attack, you have to change your diet’. But it’s not that.”

Given the lack of knowledge amongst medical professionals, participants had received very little information about SCAD. Some had received ‘absolutely zero information’, with many commenting that ‘nobody told me anything’. Participants talked about receiving conflicting information from different health professionals: “I had two specialists tell me two different things. That was a bit of a struggle”. For many, the ‘knowledge deficits’ and ‘information scarcity’ was the worse aspect of their experience:

“the worst thing is the lack of credible, solid information, consensus about what causes it, what’s the best way to deal with it, how do we manage it moving forward”

Very few participants had received any written information about SCAD. Instead, most had received general information about typical atherosclerotic heart attacks: “the GP just puts you in the heart attack basket”. This left people floundering for information:

“the lack of information, it’s exasperating, it’s frustrating, it’s tiresome. And it means that we’ve basically had to do all our own research on this. But you don’t know where to look, and you don’t know what you’re looking for”

This issue dominated discussions and impacted on all other themes and sub-themes that arose. The over-arching theme, together with the major themes and sub-themes, are shown in Fig 1.

Download:

• PPT
  PowerPoint slide
• PNG
  larger image
• TIFF
  original image

Fig 1. Themes and sub-themes.

https://doi.org/10.1371/journal.pone.0273978.g001

Major theme 1. Emotional impacts.

Participants reported a range of emotional impacts of SCAD. Broadly these included confusion at the time of the event and beyond, shock and disbelief once diagnosed, followed by uncertainty related to limited or conflicting information in terms of management and prognosis. Other emotions included fear and anxiety, loss, isolation and abandonment, depression, guilt, invalidation and embarrassment, a sense of unfairness and vulnerability. Participants referred to the ‘roller-coaster of emotions’, with an array of intense and fluctuating emotions over the recovery period.

1a. Shock and disbelief. Once diagnosed with SCAD, participants were commonly in a state of shock and disbelief because the SCAD event was sudden and unexpected. Because of its non-atherosclerotic nature, the event occurred to people as ‘random’, ‘spontaneous’ and ‘something just out of the blue’. Most had not seen themselves as a candidate for heart attack, typically describing themselves as ‘not at risk’ because they were ‘fit and healthy’. Some had previously been reassured by their GP that they had very low heart disease risk because they had no risk factors—‘he said I was in excellent health’—which exacerbated feelings of shock when faced with the SCAD diagnosis.

1b. Confusion and uncertainty. For many participants there was considerable confusion at the time of the event, due to their lack of familiarity with SCAD, relatively young age, and absence of traditional CVD risk factors. Many commented that they “didn’t know that there are other types of heart attacks” and that they therefore “didn’t think it could be a heart attack”. Participants tended to interpret their symptoms as non-cardiac, attributing them to heartburn, “gastro”, strained muscles, slipped disc, appendicitis, or anxiety. On presentation at hospital, the symptoms were also often regarded by health professionals as non-cardiac, which created delays in diagnosis and treatment. Participants sometimes stated that they “felt like a fraud” due to the confusion at the time of diagnosis.

Participants remained confused well into their recovery period due to a lack of clarity about SCAD, many stating that “no-one seems to know what it is or how to manage it”. There was confusion about the underlying causes of SCAD, including about the role of fibromuscular dysplasia (FMD), hormone issues, migraine and other conditions. Similarly, there was confusion about the potential triggers for the acute SCAD event. Participants commonly stated that lack of consensus about causes and triggers was “frustrating”. The apparent rarity of SCAD added to confusion about the diagnosis, leaving people with an unanswered question about “why me?”. This was particularly the case for male participants who commented that they were an “outlier” or “out of the norm”. Confusion about management and prognosis, including recommendations regarding resuming daily activities and exercise, and potential for recurrence, was extremely common.

Participants highlighted the “the uncertainty, the not knowing” as being amongst the worst aspects of having had SCAD. Uncertainty was tied specifically to having received inadequate or conflicting advice from health professionals.

“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. Whether that’s due to lack of information, lack of knowledge from cardiologists. My GP didn’t even know what a SCAD was”.

Some participants even stated that they would have preferred to have a more typical type of heart attack to avoid the uncertainty and the unknown trajectory of SCAD:

“I wish I had had a traditional heart attack, I wish I had had a stent or stitches up my chest or something, because then I would be fixed”.

1c. Unfairness. The lack of risk factors for a traditional heart attack also created a sense of unfairness for some people, with people commenting that “I’d been looking after myself, so ‘why me?’”. Some compared themselves to people who had numerous ‘traditional’ risk factors, commenting “it isn’t fair that it’s happened to me”. This created feelings of annoyance and anger because they “did everything right”.

1d. Fear and anxiety. Almost all participants talked about a general sense of anxiety and fear in the aftermath of SCAD. While for some fear and anxiety had abated over time, for others the anxiety had been chronic and persistent. Lack of knowledge of SCAD amongst health professionals exacerbated anxiety: “when the people who are looking after you don’t even know what they’re doing, it’s very scary” and “It adds to the anxiety because you don’t feel that you are getting the best care, or the best advice”. Fears related specifically to recurrence, the future and death, forming three sub-themes:

1. 1d(i) Fear of recurrence
2. Fear of having another SCAD event was very top-of-mind for many participants and was “constantly hanging over your head”, “an over-riding fear”, “all-consuming” and, for some, “the worst thing about it”. The concerning statistics relating to recurrence exacerbated this fear: “when you read that you’ve got a huge chance of dropping dead, that’s scary”. People talked about fears of having another event at work, whilst driving, whilst at home alone, whilst with their children, and whilst travelling. Fear of recurrence was exacerbated by lack of knowledge about SCAD’s causes and triggers: “You don’t know when it will happen again”. Many people avoided activities, particularly those involving lifting or requiring physical exertion, for fear of triggering another SCAD. Participants raised concerns about travelling far from home or being a long distance from hospital: “I’m hesitant to go on a long trip, even a long drive. I feel I’ve got to stay close to where I can get to hospital quickly if I need to”. Some people had become hypervigilant about “constantly checking my blood pressure and heart rate” while doing activities, again due to fear of triggering an event. Some commented that they were “scared of getting upset or agitated” and “stopped (myself) from crying or getting angry”, explaining that they avoided stressful situations or emotional arousal for fear of triggering another SCAD. Some were considering taking anti-anxiety medication to reduce the likelihood of anxiety triggering another SCAD event. Many people talked about having readmitted themselves to hospital thinking they were having another SCAD.
3. 1d(ii) Fear of death
4. Participants talked about their heightened fear of death since having SCAD, commenting that they were “more worried about death” and “more conscious of dying”. Most stated that they “didn’t think about death until the SCAD”. Some raised the issue of death in terms of a realization that they had narrowly escaped death.
5. 1d(iii) Concerns about the future
6. In addition to specific fears of recurrence and death, participants mentioned a more general fear about the future commenting that they felt “uncertain and dubious about what the future held, and how are you going to recover from this?” and “having to live with this concern, this worry, hanging over my head. That makes me anxious about the future”.

1e. Loss and grief. Participants described many losses they had faced since having SCAD, which were grouped into four sub-themes. Losses related to control, self-confidence, trust in the body, and identify, forming four sub-themes:

1. 1e(i) Loss of control
2. Participants commented that they had had to relinquish control over certain activities or responsibilities, including physical activities, household duties, and other choices and decisions: “loss of control of the most simple things, like where you go, what you do”.
3. 1e(ii) Loss of self-confidence
4. Participants talked about effects on their self-esteem, commenting that they had “lost confidence in day-to-day living”. For some participants, weight gain associated with medications and, to a lesser extent, a reduction in physical activity had impacted on self-esteem. Participants often commented that weight gain was “definitely taking its toll on me”, noting that “it’s very depressing”, “it’s embarrassing”, and “I hate it, it’s terrible for my self-esteem.”
5. 1e(iii) Loss of trust in the body
6. Participants sometimes commented “my body has let me down” and, again, this was exacerbated by having SCAD in the context of being fit and healthy: “the hardest thing is trusting my body again. I just relied on it so heavily throughout my entire life”.
7. 1e(iv) Loss of identity
8. Participants talked about the negative impacts of SCAD on self-perception and identity and having to come to terms with and accept that they are “not the same person as before”. Again, this was particularly challenging for those whose identity had been tied up in physical abilities, including those who had been elite sportspeople: “it’s such a huge blow to your image of yourself, and your image of how your life is going to be. It’s been hard”. It was also heightened for those who had been high achievers in their professional life: “My whole sense of identity is about working hard, pushing myself, achieving things. And this has taken a lot of that away, because I just can’t do that anymore. It’s had a big impact”. Some indicated that SCAD defined their life: “It’s like a fork in the road. Everything in my mind now is ‘before’ and ‘after’ that episode”.
9. 1e(v) Loss of freedom
10. Many participants talked about restrictions on their lifestyle due to SCAD, highlighting this as amongst the worst and “most confronting” aspects of the event: “I could always do what I wanted to do and not having that carefree attitude or approach, I find that the hardest part, mentally”. These restrictions ranged from more strenuous activities such as “not being able to do all the exercise I want to do” or “not being able to get back to playing soccer” to more mundane things such as “being told I can’t even vacuum” or “all of a sudden you can’t even mow the lawn”. There was often a sense of grief associated with not being able to exercise at their pre-SCAD levels: “How do I manage that? Being told that there are certain things that I’ll just never do again”. For some, this was life-changing:

“the switch has been flipped and the life that I had before no longer exists. It’s a new life. It’s transitioning and adjusting to that. And at (young age), that’s a lot to take on”.

1f. Isolation and abandonment. Lack of information and support in hospital and after discharge led to feelings of isolation, with participants commenting: “you go home and you’re on your own. You’re basically navigating it alone” and “it’s pretty isolating”. Many participants had little or no emotional support during their recovery, which exacerbated feelings of isolation, and commented that they felt “completely abandoned” by health professionals. One expressed this strongly:

“I felt completely deserted once I left hospital, completely. I was very scared and looking for someone to give me some guidance, and there was nobody. I felt completely deserted. From the hospital and the doctors, no-one knew, no-one was telling me anything”.

1g. Guilt. Participants talked of feelings of guilt, which again was often exacerbated by lack of knowledge of the cause of SCAD or a feeling that they had caused it themselves: I thought “what have I done wrong?” and “I was stressed at work, I was working too hard. There is guilt for that”. Some also talked of feelings of guilt “because I’d put my family through so much distress”.

1h. Invalidation and embarrassment. Many participants explained that, because of the non-atherosclerotic nature of SCAD, other people–including family, friends and health professionals—often minimised the event and commented that “it wasn’t a proper heart attack”. Common misconceptions about SCAD prompted others to assume that the person had traditional risk factors, which left people feeling invalidated, misunderstood, and dismissed:

“People go ‘oh, but it wasn’t really a heart attack’. That really gets my back up. Because it was a heart attack, it was just caused by a different mechanism”

“They say ‘well, you’re probably a bit overweight, do you have cholesterol, what’s your blood pressure like?’ Well actually everything is fine, this has nothing to do with your traditional plaque in your arteries. But you have to explain that. It makes me annoyed”

Participants sometimes indicated feeling embarrassed for having a heart attack as it implied that they were making unhealthy decisions or not looking after themselves, which left people “at great pains to explain that it’s not a normal heart attack, I don’t have atherosclerosis and I’m actually healthy”.

1i. Depression. While few participants talked specifically of having experienced clinical levels of depression, many talked about low mood, feeling “pretty sad” and being “on the verge of depression”. Some mentioned factors indicative of depression, such as losing pleasure in activities they had previously enjoyed. Several talked about fluctuating mood, commenting that “your moods are all over the place” and “there are good days and bad day”:

“you are all over the shop, emotionally and mentally. You do get a bit teary, because it’s such an overwhelming thing to be hit with. It’s hard to stay positive”

1j. Vulnerability. Participants talked about a heightened sense of vulnerability since SCAD, noting that “you have to suddenly think of yourself as a vulnerable person”. Some noted a more acute awareness of the fragility of life: “There is a sense that life is pretty fragile. A sense of vulnerability. That unknown again. That stuff you can’t control. We don’t know what’s going on in our bodies”.

1k. Frustration. Almost all participants commented about extreme fatigue and breathlessness in the weeks and months after SCAD, with many commenting that they were “completely washed out” and “very, very tired and breathless” with some complaining that they were “knackered all the time!”. This was particularly challenging for people who had, on the whole, been fit and physically active prior to SCAD, with many noting that they felt “completely frustrated” about their level of fatigue. Some noted that “fatigue has been the biggest thing, not being able to do the things I would normally do”.

Major theme 2: Issues with self-management.

Participants described a range of difficulties regarding self-management of their condition, again often linked to inadequate or conflicting information.

2a. Helplessness and incompetence. Due to its non-atherosclerotic nature and in the absence of traditional CVD risk factors, SCAD left people feeling helpless in managing their condition: They noted that SCAD-related heart attack is “harder to manage because you can’t blame it on things you can change” and “there’s no way you can fix it by the normal heart attack strategies”. This lack of control created fear:

“normally with a heart attack, you get back to exercise, eat right, and you can fix this. But with SCAD I thought ‘how am I going to fix this? How am I going to help myself?’ I didn’t know, so that’s why I was frightened”.

2b. Hypervigilance about physical symptoms. Participants indicated that since their SCAD they had become highly focussed on their body and physical symptoms, including racing pulse, irregular heartbeat, and chest pain. Many had experienced “shocking and persistent chest pain” since the SCAD, noting that this was “very disconcerting”. Many had become “hyper-alert and hyper-sensitive to anything that happened in my body”. They commented that this hypervigilance was “tiring” and “made me feel like I was probably seen as a hypochondriac”. Side-effects of medications sometimes mimicked signs or symptoms of heart attack, exacerbating fear and concern: “all that sensation around your chest, and heartburn, it just freaks you out”. Some participants had decided to stop taking certain medications due to the intensity of side effects.

2c. Fears and confusion resuming usual activities and exercise. The issue of when and how to resume usual activities and exercise was a great concern for participants, with a lot of confusion and fear related to doing any type of physical or strenuous activity. Many commented that they avoided activities, often asking themselves “is this the thing that is going to kill me?”. Fears related to extreme levels of exercise such as hiking and bike-riding, as well as more minor activities such as lifting children, doing housework or gardening, and doing moderate activities such as walking or jogging. Many commented that they had previously been “very independent” but now “have to rely on other people to do the most basic things”, which often caused frustration “because you can’t do what you used to do”. The constant internal questioning around whether or not to resume certain activities, or to undertake certain tasks, was particularly frustrating for some people.

“It’s that constant analysis about whether something you want to do is something that you can or should do. Whereas before you’d just go and do it, without a second thought. It is a big adjustment””

Again participants often compared themselves to non-SCAD heart attack counterparts.

“my friends who had (a traditional heart attack), they have healed and are living their life, they’re running, they’re doing all the things they used to do. Whereas I’m still a bit timid about getting back to that kind of physicality in my life. So that’s what I’ve found the hardest”

2d. Concerns about medications. Several participants were overwhelmed and upset about the number of medications they had to take, with many commenting that they had never taken medications prior to SCAD and that it was “a big adjustment” and “really upsetting”. Many expressed concerns and confusion about their medication regime due to their perception that that these traditional CVD risk-lowering medications were not relevant for them: “why am I on cholesterol medication when I don’t have a cholesterol problem?”. Some were concerned that prescribed blood thinning medications were contraindicated: “you don’t want a drug like aspirin that’s going to encourage bleeding”.

Lack of knowledge about SCAD amongst primary care physicians exacerbated medication concerns: “nobody has any idea, they push you to the side and go ‘Here, take this medication, you’ll be fine’” and “they put you on the quintuplet thing of the usual bypass meds". Some people had made their own decisions to stop taking certain “unnecessary” medications:

“I decided to come off the medication. You feel a little bit like you’re doing your own research and making your own decisions. That’s what I’ve been doing anyway”

“I said to my GP ‘look, I don’t need to be on these statins, my cholesterol is fine, this is not an atherosclerotic event. I’m not taking them’. And he said: ‘I can understand, yeah stop’. So I was off them within a week”

Many participants talked about physical symptoms which they attributed to side effects of medications. These commonly included breathlessness, fatigue, weight gain, memory problems and “brain fog”, which were often attributed to medications for blood pressure and cholesterol, including beta-blockers and statins. Less common symptoms included indigestion, neck pain, difficulty swallowing, nightmares and mood swings. A handful of women also highlighted difficulty in managing menstruation due to blood thinning medication, stating “periods are impossible to manage”.

Major theme 3: Family impacts.

Several participants were dealing with concerns related to family members, including their potential risk of SCAD, emotional impacts, difficulties managing family responsibilities, and over-protectiveness of family members.

3a. Concerns about SCAD risk in family members. In light of known genetic links in SCAD, participants raised concerns about their children’s risk of SCAD, with concerns for their children often outweighing their own personal fears: “My biggest worry is not my life, it’s theirs, it’s my kids.” Concerns for their adult daughters and pregnancy were raised, given that SCAD is associated with peripartum status. “I’m very worried about my two daughters when they have children, and beyond, it’s a big concern”.

3b. Worry about emotional impacts on family. Participants talked about worry and concern experienced by family members, who were “stressed and anxious because I’d had a heart attack”. These concerns were greatest for those with young children and were particularly acute for women who had been the major caregiver in the family: “you’re the mum, you’re the one who does everything, you’re not meant to be sick”. Concerns about the consequences for children who had witnessed the event were also raised: “they were terrified and panicked” and “they’ve seen things that teenagers shouldn’t have to see”. The mental health impacts of SCAD had put additional stress on family members: “With the emotional roller coaster that I have, my husband feels like he’s walking on eggshells the whole time. He doesn’t know which (me) he’s going to get. It’s hard for him”.

3c. Difficulty managing family responsibilities. Participants talked about the stress of multiple roles and difficulties managing family responsibilities in the aftermath of the SCAD:

“All the internal pressures of life still continue: running a house, managing the kids, budgeting, that just continues. So often you think ‘I just need a break. I just need to recover. I just need some time, some space’. And you don’t get any of that. For me it’s been pretty bumpy”

For some, SCAD had created tensions in the family related to household tasks and other changes, with some commenting the SCAD had put “extra burden” on other family members.

3d. Over-protectiveness. For some participants, family members, sometimes including young children, had become over-protective. Some talked about being “wrapped in cotton wool”, “being monitored”, and “fussed over”, and feeling “they were treating me like I was fragile”. Some stated that this was frustrating: “It frustrates me sometimes, you do get a bit angry, you want your independence”.

3e. Decisions regarding future pregnancy. For a small number of participants, SCAD had impacted on future decisions about pregnancy and having children: “We were just starting to think about trying for a second child, and my cardiologist has said that’s out of the picture now. So that’s been a big emotional burden that we’ve had to come to terms with.

Major theme 4: Impacts on work life.

4a. Reduced ability to work. SCAD impacted negatively on work in a variety of ways. Some participants had missed new work opportunities, while others had reduced or modified work hours or tasks to reduce their work pressure since the SCAD. Some had retired or stopped paid work, noting either that their work capacity had decreased: “I can’t do what I used to do, which is hard to accept”, or that they had brought retirement forward: “I used it as an excuse really”. Others felt they had returned to work too early and were not ready, or would have preferred to work less but were not in a position to do so. Related to work impacts, participants also talked about the financial impacts of SCAD: “there’s a financial impact, a massive one. The financial impact was just terrible”

4b. Concerns about work performance. Participants worried that they were not performing as well at work compared to pre-SCAD, or were left questioning their ability: “It definitely makes me question whether I can give as much as I used to, to my workplace” and “can I seriously give my job my best now?”

Major theme 5: Information and supports.

As noted, a lack of information was an over-arching theme that permeated all discussions and impacted on all other areas. Specific themes related to information and supports emerged, including a reliance on the internet, shortcomings of CR programs for SCAD patients, and preferred supports.

5a. Reliance on the internet. As they were rarely provided with information from health professionals, participants relied heavily on the internet for information during early recovery: “if it wasn’t for Google, I wouldn’t have known anything. I would have been literally on my own” and “You become obsessed about searching on the internet; I was obsessed about reading everything I could about it”

In their search for information online, participants often named the Victor Chang Cardiac Research Institute website and the MAYO Clinic website as their preferred sources of credible information. The Australian SCAD Research Inc. Facebook group was also highlighted as being helpful, particularly for inspiration and information: “It’s a wealth of information”, and for feeling that you are not alone in having had SCAD: “to hear from people who have had similar experiences” and “it’s that bit of encouragement, that there is light at the end of the tunnel”. While social media, including Facebook, was useful for obtaining information, most participants did not gain emotional support through this medium: “you gather information, but emotional support, no”.

5b. Shortcomings of cardiac rehabilitation programs. Most participants had either chosen not to attend CR as they did not think it would be relevant for them, had been advised by a health professional not to attend as it “wasn’t suitable”, or it was not made available to them. A small number of participants had attended CR and most had found it to be irrelevant to their needs: “it’s very annoying because lots of things they’re saying and advising you, it’s not relevant for you”. Limited knowledge amongst CR staff undermined participants’ confidence: “You lose all faith in them and in everything they tell you”. Participants commented on the older age and poorer health of the other CR attendees, which highlighted their feelings of lack of belonging and isolation, and left them feeling like “a fish out of water”. On the whole participants noted that traditional CR “doesn’t cater for SCAD” and “the information you receive is not relevant.” Many commented that they needed SCAD-specific CR: “I would like to see some sort of rehab program for SCAD patients”. Only a handful of participants who had attended CR had found a few aspects of it to be helpful.

5c. Preferences for support group. When asked about support preferences, participants stated that being with other SCAD survivors would be beneficial, both for information exchange and emotional support: “being able to talk about it with people who are going through the same thing, exchanging information, share your fears and worries, that would be very, very useful”. They noted that it would be beneficial to have contact with people who have recovered and resumed their usual activities and exercise, for inspiration and support: “that light at the end of the tunnel, that it’s not all doom and gloom” and “having others who have gone through it is by far one of the greatest supports, because they have lived it. The more of the stories you can hear, the more you get the big picture”. Participants specifically noted that a support group would be helpful, particularly with facilitation by a health professional and/or SCAD survivor.

5d. The need for information and support in hospital. Participants commented of the need for more emotional support in hospital, including being warned about the stressfulness of the recovery period: “The emotional side of it, I think it needed to be talked about a bit more in hospital, before going home”. Participants also suggested that information about likely emotional impacts of SCAD should be provided on discharge from hospital, together with referral for emotional support with counsellors specialising in SCAD:

“You need to be given something as you leave that tells you that you are possibly going to suffer anxiety, you’re going to have an emotional rollercoaster because of this. There’s not enough information as you leave hospital”.

Other suggestions included: “a brochure with phone numbers of counsellors you can talk to who are specialists in SCAD” and “an organisation that specialises in the emotional impacts of SCAD, that would be empowering”.