Research Roundup #3
For this edition of Research Roundup, I’m “back in my lane” talking about psychosocial research (and not trying to describe cardiac imaging studies – whew!)
There are three articles I’m focusing on this month. Why did we decide to combine these three articles into one Research Roundup column? First, they are recent, published in the last couple of years. But also because there is considerable overlap between these studies in their methodology, their focus, and their findings.
Here’s the common denominator of the three: In study after study, researchers are finding that SCAD survivors continue to say a lot of the same things about the stress of SCAD, the lack of information about SCAD, the related emotional consequences of the experience, and the desire for more knowledgeable and easily accessible SCAD-specific support.
Back in 2018, 5 years ago – a LOOOOONG time in SCAD world – my colleagues and I published the results of a survey of SCAD survivors that had been conducted a few years prior. At the time, our study was the largest investigation of SCAD survivor experiences: we reported on survey results from 367 SCAD survivors. In the abstract of our article, we concluded:
“Spontaneous coronary artery dissection–based informational support was frequently rated as inadequate, whereas other supportive resources varied in their helpfulness and accessibility. Participants reported positive experiences in cardiac rehabilitation and strong interest in SCAD-specific, professionally led, online patient education and support groups.”
Guess what? Some of these same issues (lack of information, appreciation for cardiac rehab, interest in SCAD-specific resources) remain top-of-mind for SCAD survivors today.
But, this month, we are pleased to bring you coverage of three recent articles that are based on different kinds of data. These studies were all qualitative, meaning that the results were based on in-depth interviews with study participants, rather than quantitive, in which the values of data (like scores on assessment tools) can be reported in numeric form. There is much commonality between these studies, so I am going to start by giving you the background on each study (authorship, study methods, demographics of participants), and then summarize the results of all of these studies, with an emphasis on where they overlap. There are details and nuances in each of these studies beyond what this column covers, but we hope to address the main findings in a responsible way.
Bear in mind that these three studies represent a relatively small number of participants: only 65 total. BUT these perspectives were obtained from an international sample of participants in Canada, Australia, and the UK. So, even though each of the studies were small, there is a lot of value in obtaining in-depth perspectives of SCAD survivors to increase our understanding of what these survivors’ experiences are, and what we can do to help.
SNAPSHOT: THE THREE STUDIES
- The first is relatively is a small but very informative study co-authored by Canadian SCAD experts from University of Ottawa, University of British Columbia, as well as Dalhousie University in Halifax. It reports findings from structured interviews with 15 SCAD patients. (The first author was Karen Bouchard, so I will refer to this as the “Bouchard et al” study). Participants included SCAD survivors who had participated in cardiac rehab. The investigators also made efforts to balance the sample between newer vs longer-term survivors of SCAD; number of SCAD events, and patient sex according to the occurrence of SCAD in the population (~ 85% women). The participants in the study were, on average, 47.5 years old, 86.7% female, and mostly white (80%). Three patients had pregnancy-related SCAD.
2. The second study by Binnie, Neubeck, McHale and Hanson, from Edinburgh Scotland and Sydney, Australia, is another qualitative study reporting on semi-structured video or telephone interviews with 20 SCAD survivors. The mean age of participants was 54.6, and 95% were female. These interviews primarily focused on what kind of support participants wanted post-SCAD. We’ll call this article “Binnie et al.”
3. Finally, the last study, published as an open access article on PLOS ONE, was co-authored by investigators from Australia and one author from Hong Kong. We’ll call this one “Murphy et al.” This was also a qualitative study. Thirty participants were interviewed during online focus groups using a semi-structured format. Participants were 52.2 years on average and 90% were female. All of the participants had experienced their SCAD in the past year.
WHAT DID THE STUDIES FIND?
The most important findings across these three studies related to SCAD-specific challenges were (drum roll, please!) …
LACK OF INFORMATION ABOUT SCAD
Let’s face it: having SCAD is a little like having a broken-down car with an incomplete owner’s manual. We’re learning more every day and pages of the manual are getting filled in (thanks, science and hard-working SCAD researchers!) but, still, all of these studies acknowledge the difficulty and far-reaching ramifications of having a diagnosis for which the information is incomplete.
- The Bouchard et al study participants reported that one of their primary concerns is the uncertainty involved in their SCAD diagnosis – what caused their SCAD? What could they do to control their risk? In addition, lack of information about SCAD leads to post-SCAD anxiety and frustration.
- The Murphy study went a bit further into this theme and reported that lack of information about SCAD is related to numerous emotional experiences. Specifically, participants’ lack of information about SCAD led to difficult emotions, like shock, disbelief, confusion, uncertainty and anxiety, but also feelings of isolation, frustration and even guilt. Lack of information also made it more difficult to function: to accurately interpret symptoms, to know how to interact with family members, to make good decisions about work and exercise and resuming activities.
- Respondents pointed to uncertainty about SCAD within themselves as patients, but also within the larger scientific community. Participants lamented the fact that many health care providers with whom they interacted had never heard of SCAD, had misdiagnosed SCAD or had provided minimal information about SCAD, and wished that health care providers were better trained about SCAD. Participants also wished there was more general awareness about SCAD.
So, based on these results, it is fair to say that the 65 participants think “lack of information about SCAD” makes a lot of things, including the emotional fall-out, more difficult for SCAD survivors. Raise your hand if you agree.
FEAR OF RECURRENCE
Despite the fact that recent studies suggest that recurrence rates for SCAD survivors is not as high as previously thought (see the last two Research Roundup articles for more info), SCAD survivor concern about recurrence frequently has a significant impact on their emotional well-being and on their behaviors.
- For example, Bouchard et al reported that some of their participants reported avoiding travel or daily activities that might be “risky.”
- Others reported making changes around stressful activities in their lives. In addition, survivors had existential thoughts of life and mortality.
- Some Murphy et al participants were also worried about SCAD recurrence, about death, and concerns about their future.
CHANGE IN IDENTITY
The shift from regarding oneself as an active healthy person, probably without any known cardiac risk factors, to that of a SCAD/heart attack survivor can be a tough transition.
- In the Bouchard et al sample, survivors reported having to shift their identity as they migrated towards roles, responsibilities and endeavors that were less “intense.”
- There was a sense of loss associated with these changes for some survivors, and concerns about being perceived as “weak,” especially for younger patients.
- Murphy et al also mentioned the loss of identity as an important issue, especially, for some participants, as athletic, successful, achievement-oriented people.
LACK OF CONTROL
Especially for survivors who had no risk factors that would have predicted SCAD, the perception of lack of control around SCAD is a tough issue. (Clinical psychologist voice here: things over which we have no control are often more stress-inducing and even traumatizing than things for which we’re prepared.
- Think about the difference between a hurricane, for which you have several days to prepare vs. a lightning strike that comes out of the blue).
- In addition, Bouchard et al mentioned the idea that these survivors had nothing to change, post-SCAD – there were no indications that changing diet, exercise, would help, so these survivors felt a diminished sense of control over their recovery process.
- The Murphy et al article also discusses the salience of feeling a loss of control post-SCAD as being one of several “losses” that SCAD survivors experience, along with a loss of freedom, loss of self-confidence and a loss of trust in their bodies.
Overall, SCAD is perceived as something that would have been difficult or impossible to control in the first place. At the risk of overusing the owner’s manual analogy, unlike “typical” heart attacks, SCAD is not a diagnosis that has a clearly-defined owner’s manual outlining what to do next.
ISOLATION AFTER SCAD
SCAD is not as rare as we previously thought, and survivors are finding each other more easily in the last few years over social media and even at in-person meetings. Even so, all of these studies mention the idea that since SCAD is different from “typical” heart attacks, survivors tend to feel different from other heart patients they encounter, partly because of their gender and age, but also because they are aware that they are working towards different goals.
- This sense of isolation can be stressful and survivors want health care providers and the larger community to be more educated about SCAD.
- Participants also reported feeling isolated at times when they were invalidated by people who dismissed SCAD as not being a “proper” heart attack.
- Binnie connected this sense of isolation to recommendations for resources for SCAD survivors – more about that in a minute.
Far too little attention has been paid to the impact of SCAD on the family.
- Participants in the Bouchard et al study were aware that there was often a shift in family dynamics, with partners, children and others taking on more responsibilities (and sometimes more anxiety) in response to SCAD. Sometimes, survivors also felt that family members avoided them out of concern about increasing stress for them.
- The Murphy et al study also pointed out that SCAD survivors were concerned about their family members’ own risk for SCAD, about the emotional impacts of SCAD on their families, difficulties regarding family responsibilities, family members being overprotective of survivors and the idea of undertaking a pregnancy post-SCAD (we’ll do a review of this science sometime soon).
Across the three studies, here’s what SCAD participants wanted, in terms of resources and services going forward:
More up-to-date information and research on SCAD
Survivors thought this was critical in alleviating the anxiety associated with uncertainty about SCAD. SCAD survivors in the Binnie study also wished that they themselves had access to good, appropriate information post-SCAD, including information about post-SCAD exercise guidelines and medication. Again, there are many ways that this can happen, such as a handbook for SCAD patients, lecture series, and more. (By the way, our goal with Research Roundup columns is to provide SCAD survivors with updated summaries of research. You’re welcome!😉) But also, the studies pointed out the idea that better education about SCAD should be available more broadly, in other words to health care providers, friends and family members – not just survivors themselves.
Cardiac rehab and exercise
For a long time, we’ve known that cardiac rehab (CR) is helpful to SCAD survivors both physically and emotionally, and that SCAD-specific cardiac rehab also has significant physical as well as emotional benefits. In all of these studies, cardiac rehab was appreciated, but survivors wanted a SCAD-specific program that could help them focus on SCAD-specific recovery goals (wouldn’t that be awesome?) OR, at least that CR programs should attempt to integrate the unique needs of SCAD patients (especially younger patients and young mothers) rather than assuming all SCAD patients need to follow the same guidelines as other CR patients (e.g., get more exercise, eat a healthy diet, cut down on salt). Participants in the Binnie study thought that SCAD-specific cardiac rehab could include SCAD-specific info about medication, chest pain management, physiology of SCAD, blood pressure monitoring, and advice on how to return to work. In addition, many of the participants from this study wanted psychological support to be integrated into cardiac rehab for themselves and their families.
Related to this were thoughts from the Binnie et al study on exercise guidance. As most participants were physically active pre-SCAD, their activity was important to them and they wanted individualized exercise plans, or maybe a female-specific program, and better information about how to safely resume exercise.
More psychological resources
Many SCAD patients report seeking psychological services on their own (because SCAD is hard, scary and isolating and can result in symptoms of anxiety, depression and PTSD – see above!). Participants in the Binnie et al study wanted psychosocial support integrated into cardiac rehab. The Bouchard et al study reported that participants wanted more psychological support focused on managing anxiety and trauma symptoms related to their diagnosis, as well as support regarding how to live well in the context of their post-SCAD restrictions or other realities.
The idea of family support also came up, and there was a suggestion from the Binnie study that family support could be rolled into SCAD-specific cardiac rehab programs. Similarly, the Bouchard et al participants endorsed the (very cool, imho) idea of secondary prevention programs. These programs might focus on educating family members, providing skills to cope with family dynamics around SCAD and reshuffling roles after SCAD, for example.
Peer support for SCAD survivors
Across the board, study participants thought that greater access to other SCAD survivors would be very helpful, and there are lots of ideas in the three studies about how this might happen (e.g., online, in groups, in person, with trained mentors). Survivors noted that online social media groups, while helpful at times, can also contain misinformation and reinforce anxiety. There does seem to be growing interest in developing SCAD-specific peer support programs with trained mentors – stay tuned!
WANT TO LEARN MORE ABOUT SCAD?
Click here to access previous editions of Research Roundup: https://scadalliance.org/latest-news/research-round-up-1/