Background

Coronary artery disease is traditionally characterised by obstructive atherosclerosis. However, up to two in five people experience symptoms of myocardial ischaemia without obstructive coronary artery disease.1 This condition can be caused by a range of underlying pathologies including coronary endothelial dysfunction, microvascular remodelling, microvascular and epicardial spasm and vasomotor abnormalities.2 A range of medical terms is used to describe distinct aspects of these conditions, including microvascular angina, coronary microvascular dysfunction, vasospastic angina, coronary vasospasms, coronary artery spasms, prinzmetal/variant angina and angina/ischaemia with no obstructive coronary arteries (ANOCA/INOCA). Women are disproportionately affected, particularly over the age of 40 years.3 4

While the prevalence of INOCA is increasingly described, the nature of this condition is not.2 To date, the primary focus has been to develop a diagnostic consensus.5–7 However, the relationships between symptoms, mechanisms, diagnosis and treatment responses are incompletely understood.8

Increasing investment in understanding diagnosis and treatment is a welcome development given the significant implications for the health and well-being of those affected. Self-reported survey data highlight a substantial adverse impact on quality of life including physical, social and mental health.9 10 However, there is a paucity of qualitative evidence about patients’ experiences of living with these conditions. This is important for understanding what is needed to improve support, long-term management of the condition and to optimise quality of life. This study investigated the lived experience of people with INOCA to gather qualitative evidence which will later inform the design and implementation of care pathways and surrounding support.

Aims

We carried out a qualitative investigation to (1) explore the lived experiences and (2) understand the support and rehabilitation needs of people living with a confirmed or presumed diagnosis of INOCA. Our analysis generated two sets of themes which are presented in two separate manuscripts. This manuscript presents findings relating to the first aim, that is, peoples’ lived experiences of INOCA conditions.

Theme 1: living with fear and uncertainty

Participants gave rich, detailed accounts of their experiences of living with a set of conditions that are highly individual but commonly underpinned with significant fear and uncertainty. It was clear from the interviews that there was no ‘typical’ INOCA presentation. Participants’ symptoms ranged in length, frequency, regularity, intensity or severity and predictability. They described either isolated, infrequent, regular or clustered ‘attacks’ involving chest pain, which was sometimes mild and relatively manageable, and at other times escalated until it was intolerable and required emergency medical intervention. For some participants, the chest pains were sometimes accompanied by breathlessness and sometimes the attacks were followed by fatigue and/or brain fog:

You can be really, really seriously bad for weeks and weeks and weeks at a time and then you think oh it’s eased off… you start to relax a little bit and then it’ll strike again. So, it can be anywhere between a couple of weeks to a couple of months‥‥ If I went [to hospital] every time I had pain I’d be there every day (P8; CMD/CAS)

…I’m not a person that has loads every day or week or whatever, it tends to come in clusters, and I can go months and months apart…. it can be very frightening and excruciating and they can range from mild to absolutely I’ve nearly passed out… We’ve had to have the ambulance out several times (P11; VSA/CAS)

There was a wide variation in predictability of these attacks. Some participants were clear about what triggered their chest pain; cold weather, physical exertion, emotional stress and/or food were variably cited as triggers, but this was individual, and no specific trigger was cited universally. Other participants felt that the attacks were largely unpredictable:

With this, you can just be sitting, not even thinking about it, and it can strike. It’s the not knowing. It’s the unpredictability is as disabling as the actual pain and fatigue (P8; CMD/CAS).

The unpredictability of these conditions, alongside the potential for attacks to become severe and highly distressing, left many participants living with substantial fear and uncertainty. The intensity of the chest pain was reported by one participant as equivalent to childbirth, and by several others as equivalent to a heart attack:

…it was… absolutely terrifying… I never in a million years thought it was going to be that severe the pain, and that sudden… that’s been the toughest thing to deal with, I think, and just that fear. (P3; CAS)

Many participants also highlighted concerns regarding their long-term health. This included questions about whether attacks were causing long-term damage to their heart, concerns about ageing and the onset of associated comorbidities:

…every time I have a spasm or a really bad spasm, especially at night because I can’t do anything about that, you know, it’s restrictive blood flow to your heart therefore is it damaging it?… Because I didn’t have an unhealthy heart and I don’t want to develop one. (P16, Variant angina)

Theme 2: disruption to normal life

For most participants, the onset of their condition had a profound impact on their everyday lives, relationships, work and employment. Many reported needing to take long-term breaks from work or retiring altogether as a result of their symptoms, which had been difficult to accept and for some had challenged their sense of identity. Others had reduced working hours or were considering doing so. Participants expressed concerns about maintaining employment while managing their condition, particularly avoiding physical exertion or emotional stress and worried about becoming too ill to work in the future:

I do feel fearful about going back to work… I don’t know how I’m going to be back working and I do feel a bit, well quite fearful really of the stress and pressure. (P17; MVA)

Social relationships were affected in different ways. Some participants described their condition bringing them closer to their family through their need for support, although this was accompanied by regret about the impact on those close to them:

… it’s drawn us together as a family and we communicate as a family in a way we wouldn’t have done before. So that’s the positive bit… But there’s a lot of negative as well, living in pain is pretty tough. And my family have to watch me in pain. (P1; CVA)

Other participants described challenges in their relationships where family and friends did not understand their symptoms or their severity:

For me, it’s more emotional relationships, as I say there has been a real breakdown in mine…When I come back in from a school run if he’s about and I’m there laid on the kitchen floor clutching at my chest and I just think he thinks I’m being dramatic (P14; MVA/Vasospam)

Some participants reported finding it difficult to commit to, or fulfil social obligations and worried about the effect on their relationships:

…this weekend we’re off to [location] for a week, which is the first time we’ve been away for several years, but it makes it quite difficult… to plan the good stuff, because you’re always kind of like yeah but what if this happens? (P7; MVA)

Theme 3: psychological impact of the journey to diagnosis

Participants’ descriptions of how they came to a diagnosis, whether presumed or confirmed, were often fraught with stories of being misdiagnosed, misbelieved or mistreated. Challenges included the invasive diagnostic tests that not all hospitals were willing or able to perform and the fact that many cardiology and other medical professionals were not aware of or accepting of these conditions:

So again back and forward, back to see a different cardiologist, oh she wasn’t having any of it, I have been a cardiologist for X amount of years, I know my job and this cannot be your heart, it’s psychosomatic again…. and this went on, gosh through my 20s, through my 30s, meanwhile I was in A&E goodness knows how many times with this pain. And they just dismissed it… They did a standard angiogram and said oh your main coronary arteries are normal…this is not your heart (P8; CMD/CAS)

So a lot of people will go into A&E. They’ll have baby rises in troponin, under the threshold…. it’s very difficult to catch a spasm in action (P1; CVA)

Participants described receiving mixed diagnoses depending on individual consultants. They also described a hierarchy of opinions at play, with many having to seek increasingly senior second opinions from specialists to establish their diagnosis. Their own opinion, as the person experiencing the pain, was often not prioritised:

And I went to see some really prominent cardiologists who misdiagnosed me… And that angiogram result, I felt absolutely validated because I thought I’m right. I am right and I was right about my body. (P1; CVA)

I did question my sanity at times and I actually thought so this is what it feels like to be mad. Because you have a sense of yourself and what you’re feeling, but all those around you perceive differently. And that had quite a huge impact on my mental health. (P2; MVA/VSA)

Several participants described distressing incidents of being admitted to hospital with extreme chest pain and yet not being taken seriously. Advocating for oneself among sceptical healthcare professionals, during or following an episode of intense pain was described by some participants using emotive language including ‘trauma’ and ‘gaslighting’:

And then when I’m being told that it’s not my heart that triggered off other things, you know, stress, anger, and then actually it’s like PTSD afterwards (P8; CMD/CAS)

The experiences reported by participants indicate an urgent need for improved awareness, understanding and training among both A&E and cardiology professionals:

And I won’t even go into A&E for whatever anymore because there’s no point… they don’t understand it and as far as they’re concerned my ECG is fine and my troponin is negative. (P15; MVA)

A few participants, especially those with longer histories of INOCA, acknowledged that there may be increasing awareness, or a shift in attitudes. This may be reflected in participants with more recent onset of symptoms attaining a quicker diagnosis:

… now the response I’m getting is actually you are a group of patients that we have neglected and it’s about time we looked after you a lot better… That was what the cardiologist said to me last time. So there is a growing awareness. (P1; CVA)

Theme 4: lack of clarity over treatment and management

Participants expressed frustration, disappointment and concern at the lack of clarity over treatment and management pathways. Many described frustrating experiences of trial and error with medication, and a lack of confidence in the sufficiency of research evidence or guidance about managing their condition:

And because of the lack of research or the lack of appropriate treatment, you can try different drugs but there’s no cure and there’s no targeted treatment at the moment. So sometimes it’s a hit or a miss. (P2; MVA/VSA)

Participants whose condition was managed in primary care rather than cardiology tended to report that general practitioners (GPs) were open-minded and willing to help, but in most cases the GP lacked specialist knowledge of the condition and had no authority to request additional cardiology tests. Participants who reported more satisfaction were those who felt that different healthcare professionals were working in a coordinated way for them:

[My GP] is very helpful and we are working together. We worked together before I found a cardiologist which would listen to me… and now we’re continuously working with cardiologist and my GP… to tailor treatment (P13; CMD)

Theme 5: coping and supportive strategies

Participants highlighted a range of factors that helped them manage and cope. There was a sense of empowerment for most in getting a diagnosis (sometimes even just presumed). Although many expressed a desire for more research to understand the underpinning causal mechanisms of the condition, they acknowledged that diagnosis provided an opportunity to educate themselves about what was happening to them:

Power! At least you know what you’re dealing with, you know what’s going on (P11; VSA/CAS)

Establishing protocols around treatment or medication was another way to regain some control. This was aided by supportive healthcare professionals, willing to work with the participant over time to understand their unique presentation of symptoms and triggers alongside their other comorbidities and circumstances:

… because with my cardiologist and GP, we were trying and looking what’s happening, the treatment, it’s not hundred percent yet, but it seems like I understand more these triggers and what to expect, how it affects me as a whole, and also how different medicines work. So I think I am… on the way to become more stable and more in control of my condition. (P13; CMD)

Common self-management strategies were another way to improve perceived control. Activities included low-impact physical activity such as swimming and walking, taking care of pets, gentle forms of exercise such as yoga or tai chi, meditation and mindfulness. Participants emphasised the importance of these activities for managing their emotions and stress levels, to reduce the likelihood of attacks and also to maintain positive well-being. Emotional well-being included accepting their condition and how it had changed their life (although reluctantly), realigning priorities, reducing their exposure to external stressors where possible and distinguishing between things within or beyond their control:

… some of the ideas that I’m just trying to implement myself… making sure I have a little walk each day or something, if I can do that, and prioritising self-care and things for me and sort of realising that actually it is OK to put myself or my family forward (P7; MVA)

Finally, participants cited the value of peer support. Many had been recruited from online, peer-led support groups and commented on how vital these were as a source of emotional support, advice and information about their condition. Some described peer support as a lifeline in helping them to secure or understand their diagnosis:

I’ve joined a group on Facebook who also have these spasms, so it’s kind of opened it up to a network of people and we can share stories and tips of how we can improve our way of life and things to look out for and just stuff like that. It has helped in that respect quite significantly. (P4; CAS)

Finding the support group has been such a relief to have an outlet to speak to people who understand where others don’t… And I’ve seen so many people say they’re so thankful for the group, like it’s literally saved so many people going through such tough times, because… it does change your life (P9; CAS)