Spontaneous Coronary Artery Dissection Across the Health Care Pathway: A National, Multicenter, Patient‐Informed Investigation

Abstract

Background

Clinical practice guidelines for the management and convalescence of patients with spontaneous coronary artery dissection (SCAD) have yet to be developed. The targeted content, delivery, and outcomes of interventions that benefit this population remain unclear. Patient‐informed data are required to substantiate observational research and provide evidence to inform and standardize clinical activities.

Methods and Results

Patients diagnosed with SCAD (N=89; 86.5% women; mean age, 53.2 years) were purposively selected from 5 large tertiary care hospitals. Patients completed sociodemographic and medical questionnaires and participated in an interview using a patient‐piloted semistructured interview guide. Interviews were transcribed and subjected to framework analysis using inductive and then deductive coding techniques. Approximately 1500 standard transcribed pages of interview data were collected. Emotional distress was the most commonly cited precipitating factor (56%), with an emphasis on anxiety symptoms. The awareness and detection of SCAD as a cardiac event was low among patients (35%) and perceived to be moderate among health care providers (55%). Health care providers' communication of the prognosis and self‐management of SCAD were perceived to be poor (79%). Postevent psychological disorders among patients were evident (30%), and 73% feared recurrence. Short‐ and longer‐term follow‐up that was tailored to patients' needs was desired (72%). Secondary prevention programming was recommended, but there were low completion rates of conventional cardiac rehabilitation (48%), and current programming was deemed inadequate.

Conclusions

This early‐stage, pretrial research has important implications for the acute and long‐term management of patients with SCAD. Additional work is required to validate the hypotheses generated from this patient‐oriented research.

Nonstandard Abbreviations and Acronyms

SCAD

spontaneous coronary artery dissection

Clinical Perspective.

What Is New?

• Research on spontaneous coronary artery dissection (SCAD) is accumulating; patient‐centered investigations are now required to deepen the understanding of how patients perceive their provided care and to identify potential avenues for intervention and further research at multiple phases on the patient's recovery trajectory.

• The results from this multisite, qualitative study indicate that awareness and detection of SCAD was low among patients; improvements in communication of SCAD and its prognosis from health care providers was desired; anxiety is pervasive, particularly in the early‐discharge period and among younger patients with unremarkable medical histories; and conventional cardiac rehabilitation and other secondary prevention programming, including informational and psychosocial interventions, are recommended but are not currently meeting the perceived unique needs of patients with SCAD.

What Are the Clinical Implications?

• The results from this study provide context for clinical practice guidelines that are grounded in patient experience and will support the development of relevant and impactful interventions at several points on the trajectory of patients with SCAD.

Spontaneous coronary artery dissection (SCAD) is a spontaneous separation of the coronary artery wall by intramural hemorrhage that may occur with an intimal tear or bleeding from vasa vasorum, consequently resulting in partial or total occlusion of coronary vessels. SCAD presents most frequently as a myocardial infarction. ¹ , ² , ³ The incidence of SCAD has been estimated to account for ≈1% to 4% of cases of acute coronary syndrome (ACS), ¹ , ⁴ but for younger women (aged <50 years), ≈40% of myocardial infarctions are due to SCAD. ⁵ At the time of ACS, SCAD is detected and confirmed by coronary angiogram ¹ , ⁴ , ⁶ and may be supplemented by intracoronary imaging with intravascular ultrasound and optical coherence tomography. The pathophysiology of SCAD is heterogeneous, but an accumulating evidence base has identified predisposing arteriopathies, genetic factors, hormonal influences, and precipitating intense physical or emotional stressors as prominent precursors. ¹ , ⁴ , ⁶ A recent systematic review and meta‐analysis of 19 studies (N=2172) reporting on the clinical characteristics and outcomes of patients with SCAD determined that approximately half of patients with SCAD have concomitant hypertension, two‐thirds have been diagnosed with fibromuscular dysplasia, and three‐quarters reported identifiable physical or emotional stressors. ² Recommendations are for SCAD to be conservatively managed; invasive coronary revascularization procedures have been reported in 15% to 30% of cases. ²

Although the frequency of secondary events among patients with SCAD varies widely in the literature, ⁷ recent estimates indicate SCAD recurrence (extension, de novo recurrent, iatrogenic dissection) occurs in 27% of patients within the first year. ⁸ A recent prospective multicenter study determined that at a median follow‐up of 3 years, ≈10% of patients had a SCAD recurrence. ⁹ Other studies have reported that major adverse cardiovascular events (myocardial infarction, revascularization, stroke/transient ischemic attack, death) are experienced by 20% to 30% of patients within 3 years of the initial SCAD event. ¹⁰ , ¹¹ Recurrent chest pain in the post‐SCAD setting is common, afflicting approximately half of all patients. ⁷ Depressed mood (20%–41%), ³ anxiety (14%–71%), ¹² , ¹³ and posttraumatic stress symptoms (23%–43%) ¹⁴ are pervasive among patients with SCAD, reflecting rates 3 to 4 times higher than the general population. Notably, prospective studies are lacking in this area. Recommendations for the convalescence of patients with SCAD have been provided in contemporary reviews ¹ , ² , ¹⁵ , ¹⁶ and 2 scientific statements, ⁴ , ⁶ but clinical guidelines for this patient population have yet to be developed. The targeted content, delivery, and outcomes of interventions that demonstrate the most benefit for this population remain unclear.

Eliciting patient‐reported experiences is essential to understanding complex health‐related problems, ¹⁷ particularly those that are underresearched and involve special populations, ¹⁸ such as those with SCAD. Patient‐oriented research is used to contextualize cardiovascular risk assessments, outcomes, and health services data, which in tandem can more adequately inform the development of interventions ¹⁹ and clinical practice guidelines. ²⁰ Three studies have investigated SCAD from the patients' perspective, ²¹ , ²² , ²³ 1 of which was a pilot study informing this current research. ²¹ One recent study focused on the psychosocial impacts of SCAD among 30 patients, but only shorter‐term outcomes were elucidated (mean time since diagnosis, 6.9 months). ²² Another study asked patients about their experiences with post‐SCAD psychosocial support. ²³ Participants reported that informational support was inadequate and that cardiac rehabilitation, general counseling, and stress management were moderately helpful. This study, however, recruited patients liberally using social media and included only female participants. Furthermore, all previous patient‐informed studies derived insights from single locations. There are no studies that have investigated patients' experiences across the health care pathway, from symptom onset to long‐term management, from multiple hospital centers using purposive sampling strategies. Investigating patients' experiences along time points in the health care pathway in several contexts will deepen the understandings of how patients perceive their provided care and identify potential avenues for intervention and further research at multiple phases on the patient's recovery trajectory.

Methods

Study Design

The data that support the findings of this study are available from the corresponding author upon reasonable request. A “small‐q” qualitative research design ²⁴ was used to capture the key elements of the SCAD health care pathway from the patient's perspective. Small‐q research uses qualitative techniques for organizing textual data, while simultaneously holding quantitative scientific values (eg, promoting the reliability and accuracy of coding, minimizing researcher subjectivity). In any qualitative research, it is compulsory to note the theoretical positioning of the study along the qualitative research continuum. This research design subscribes to a realist ontology and aligns with an epistemological position of objectivism and a theoretical perspective of postpositivism. This study is the first phase of a larger program of research that aims to develop a feasible and acceptable rehabilitative intervention that has clinically significant benefits for patients with SCAD across several countries. Consolidated Criteria for Reporting Qualitative Research guidelines were followed (Data S1).

Setting and Participants

The study was conducted at 5 academic teaching hospitals across 5 Canadian provinces: (1) University of Ottawa Heart Institute (coordinating center), Ottawa, Ontario; (2) Vancouver General Hospital, Vancouver, British Columbia; (3) St. Boniface Hospital, Winnipeg, Manitoba; (4) Centre Hospitalier de l'Université de Montréal, Montreal, Quebec; and (5) Queen Elizabeth II Health Sciences Centre, Halifax, Nova Scotia. All hospitals are large tertiary and quaternary cardiac care facilities (beds: range, 600–1900), serving a large catchment area (range, 1.1–1.8 million). Ethics or institutional approval for this study were received at all participating hospitals. All patients provided informed consent to participate.

Eligibility criteria for participants included SCAD diagnosis on coronary angiography, age ≥18 years, and ability to read and understand English or French. Typically, sampling in qualitative research is not designed to be representative of the population, but in this study, patients were purposively selected so that the overall sample is closely representative of current SCAD population norms. ² This involved screening and selecting potential participants on the basis of a priori criteria, until preselected categories of sex (male/female), age at SCAD occurrence, and number of SCAD events was obtained across the participant sample. To provide insight on the full trajectory of the time points in the SCAD health care pathway, participants were also purposively selected to represent a range in time since SCAD diagnosis.

There are no prescriptive rules for preestablishing a sample size in qualitative research. ²⁵ In this study, the final sample size was determined by fulfilling the purposive sampling criteria ²⁶ and through achieving data saturation (ie, when accumulating data does not produce additional insights). This occurred upon completion of ≈15 to 20 interviews per site, which was congruent with the research team's pilot qualitative studies on SCAD. ²¹ , ²⁷ This sample size is commonly sufficient when looking for disconfirming evidence or trying to achieve maximum variation among a purposive sample of participants commenting on a homogeneous event. As there are potentially sociodemographic differences and treatment variations across hospital sites and provinces, the researchers sought to obtain data saturation at each site.

Data Collection Procedures

Patients fulfilling the purposive sampling criteria were contacted by a clinician within the patient's circle of care or by a research coordinator to describe the study. All participants completed a sociodemographic questionnaire online using a secure data survey software (REDCap); medical information was confirmed by medical chart review at each respective site. Individual structured interviews with 1 of 2 interviewers (K.B. or K.L.) followed. All interviews were conducted online using the Zoom health care platform. The interview guide (Data S2) was developed by the research team on the basis of themes identified in previous pilot qualitative studies on patients with SCAD and health care providers' perspectives of SCAD ²¹ , ²⁷ and subsequently pilot tested with patient partners (N.L. and H.R.). The audio files were transcribed verbatim for analysis.

Data Analysis

The Framework Method, ²⁸ using a combined deductive–inductive approach, was used to analyze the data. The Framework Method is useful for producing structured outputs of summarized data, particularly among larger qualitative data sets, as with the current sample. ²⁹ Using the computer‐assisted qualitative data analysis software NVivo (Lumivero, Denver, CO), ³⁰ the content from each interview transcript was divided into preidentified relevant time points in the health care pathway, ³¹ which were characterized chronologically (eg, pre‐SCAD, awareness and detection, hospitalization, early discharge, short‐term follow‐up [3–6 months], long‐term management [>6 months]). Within each phase, inductive codes (ie, researcher‐generated labels that summarize or condense important concepts, processes, attributes, values, etc) were assigned through a line‐by‐line examination of a randomly selected subset of the data (n=15 transcripts). Codes were grouped together into categories, forming an analytical framework that was subsequently applied to all remaining transcripts. A matrix was developed that included the categories and illustrative quotes from each participant. The next phase involved interpreting the categorized data into overarching themes; frequencies were then calculated to depict the magnitude of each category among participants.

Results

Across all sites, 100 participants were contacted to obtain consent (Figure S1). Of those, 94 patients consented to participate in the study. Four participants did not complete an interview, and 1 interview audio file was corrupted so it could not be transcribed. Eighty‐nine participants (88.8% women) comprised the final sample (Table). Patients were, on average, 53.3 years old, were mostly White individuals (89%), and had achieved a high level of education (81.9% completed a postsecondary diploma/degree). The average time since diagnosis was ≈2.5 years (range, 1 month to 14 years). SCAD was medically managed in most cases (79.8%), while 16.9% were treated with a percutaneous coronary intervention and 3.3% had coronary artery bypass surgery. Approximately 92.2% of patients reported using a β blocker. A subsequent SCAD event (ie, definite recurrence confirmed by angiographic assessment) was experienced by 22.5% of the sample. Of note, just under half of patients (48.3%) with SCAD participated in conventional cardiac rehabilitation. Please see Table S1 for the list of the categories derived from the analysis as well as representative quotations.

Table .

Participant Demographic and Clinical Characteristics

Variable	N=89
Age at the time of SCAD diagnosis, y, mean (SD)	53.2 (10.4)
Time since SCAD diagnosis, y, mean (SD)	2.55 (2.8)
Sex, n (%)
Female	79 (88.8)
Male	10 (11.2)
Race or ethnicity, n (%)
White/Caucasian origin	82 (93.2)
Middle Eastern	2 (2.3)
North American Indian, Metis, Inuit Eskimo	4 (4.6)
Marital status, n (%)
Married	56 (62.9)
Common law	13 (14.6)
Separated	4 (4.5)
Divorced	6 (6.7)
Single	10 (11.2)
Highest educational level, n (%)
High school	16 (18.2)
Trades/College	38 (43.2)
Undergraduate/Postgraduate	34 (38.6)
Total annual household income before taxes, n (%)
Less than $24 999	3 (3.6)
$25 000–$34 999	3 (3.6)
$35 000–$49 999	10 (11.9)
$50 000–$74 999	19 (22.6)
$75 000–$89 999	4 (4.8)
$90 000 and above	45 (53.6)
Imaging to supplement angiography, n (%)
Angiogram only	78 (87.6)
Intravascular ultrasound	2 (2.3)
Optical coherence tomography	9 (10.1)
SCAD predisposing conditions, n (%)
Fibromuscular dysplasia	21 (23.6)
Multiparity	11 (12.4)
Connective tissue disorder	1 (1.1)
None identified	56 (62.9)
Initial management, n (%)
Percutaneous coronary intervention	15 (16.9)
Coronary artery bypass grafting	3 (3.4)
Medication management	71 (79.8)
Peripartum SCAD, n (%)	6 (7.6)
Recurrent MACEs, n (%)	20 (22.5)
β Blocker use, n (%)	83 (92.2)
Comorbid or previously diagnosed physical health conditions, n (%)
Coronary heart disease	16 (18.0)
Congenital heart disease	1 (1.1)
Arrhythmia	6 (6.7)
Valve disease	2 (2.3)
Type 2 diabetes	1 (1.1)
Colorectal cancer	1 (1.1)
Breast cancer	2 (2.3)
Arthritis	11 (12.4)
Asthma	6 (6.7)
Musculoskeletal injuries	37 (41.6)
Osteoporosis	2 (2.3)
Hysterectomy	9 (10.1)
Systemic inflammatory disease	1 (1.1)
Hormone replacement therapy	4 (4.5)
Comorbid mental health conditions, n (%)
Depressive disorder	7 (7.9)
Generalized anxiety disorder	15 (16.9)
Adjustment disorder	1 (1.1)
Posttraumatic stress disorder	4 (4.5)
Cardiac rehabilitation participation, n (%)	43 (48.3)
Menstrual status, n (%)
Premenopausal	22 (29.0)
Perimenopausal	9 (11.8)
Postmenopausal	45 (59.2)

Please note that values may not sum to 100% due to rounding or missing data; menstrual status collected on women only. MACEs indicates major adverse cardiac events (nonfatal myocardial infarction, unstable angina, cardiac death); and SCAD, spontaneous coronary artery dissection.

Pre‐SCAD: Precipitating Events and Risk Factors

Participants reported a range in precipitating “trigger” events and risk factors that were perceived to be connected to the SCAD. A majority (56%) felt that emotional distress was the most likely factor attributing to their SCAD event, with an emphasis on anxiety symptoms; a third of this subset of patients also reported an absence of “traditional cardiovascular risk factors.” In the full patient sample, only 3% reported that their SCAD was precipitated by physical exertion. Several other factors were attributed to the SCAD event, including childbirth, hormonal changes, genetics, and lifestyle (eg, sedentary behavior, diet). There were no identifiable differences in demographic factors related to antecedent events, but it is noteworthy that those who attributed the event to emotional distress were twice as likely to initially misidentify their SCAD as a noncardiac event. Approximately a quarter of all participants described no trigger to the SCAD and noted that they had unremarkable medical histories or no to few traditional risk factors commonly associated with heart disease. This prompted feelings of confusion, frustration, and a sense of unfairness. In addition, participants who did not report a perceived precipitating event before the SCAD were more likely to fear a recurrent SCAD.

Awareness and Detection: Identifying Symptoms as a Cardiovascular Event

Participants reported a wide range in symptoms associated with the SCAD event, most commonly chest, jaw, shoulder, and back pain or discomfort, as well as gastrointestinal symptoms, feelings of deliriousness, and weakness. Concomitant anxiety or panic symptoms were also common, which made it difficult for some patients to identify their symptoms as a cardiac event. Indeed, 65% of participants did not initially identify their symptoms as a potential cardiac event but instead attributed the pain or discomfort to anxiety, indigestion, heartburn, anaphylaxis, food poisoning, or muscular/skeletal injuries. Approximately 15% of patients did not present to the hospital after symptom onset and instead waited until the end of the workday, task, or social situation (eg, grocery shopping, dinner with friends) before calling an ambulance or presenting to emergency. Three patients experienced pain or discomfort that persisted for multiple days before seeking medical assistance. Participants discussed feeling embarrassed about their symptoms and did not want to burden loved ones or emergency medical services. Just over half of patients perceived that their health care providers accurately identified their symptoms as a cardiac event upon presentation. Nineteen percent of patients felt that their provider initially misidentified their symptoms, most commonly as an anxiety attack, and that this misidentification was more frequent in first responders and in acute emergency care. This initial symptom misidentification was more common in patients who were at least 3 years postdiagnosis.

Hospitalization: Accessing Informed Care and Resources

Accessing informed care and resources at the hospital was paramount to patients' adjustment following discharge. It was apparent that most patients received a high level of care in a hospital; however, approximately a third of patients felt that their health care providers were ill‐informed about SCAD, including the patient's prognosis and recommended rehabilitation. Although 50% of patients perceived that their provider was adequately informed about SCAD, nearly 80% of patients still felt underinformed. Patients in this sample requested evidence‐based information on (1) recurring chest pain; (2) the likelihood of experiencing a subsequent SCAD event; (3) the suggested frequency of required follow‐ups; (4) a list of permitted and nonpermitted activities (eg, thresholds for physical exertion, resuming work or travel); (5) the need for and forecasting future use of medications; and (6) an overview of common changes experienced by patients and family members following the cardiac event. Patients felt ill‐prepared for discharge, particularly as it related to approaches for self‐management to prevent the recurrence of another SCAD. This lack of information before discharge prompted a prevailing sense of anxiety that characterized the proceeding phases of the trajectory of patients with SCAD.

Early Discharge: Living With New Limits and Potential for Event Recurrence

There was a general consensus across the interviews that early discharge was the most challenging period after SCAD. More than 60% of patients felt difficulty adhering or adjusting to new limits, most notably medication requirements and restrictions on physical activity. Fatigue was a commonly cited barrier that patients confronted in the immediate weeks after discharge, which was compounded by the side effects from prescribed β blockers. The majority of patients (62%) felt that the recommended thresholds for physical activity and social/emotional exertion were relevant to them as patients with SCAD, but it was also common for patients to report that these restrictions were too conservative. Patients simply wanted to do more. Half of the patients cited recurring chest pain, which contributed to a heightened awareness of bodily discomforts and a pervasive anxiety that a subsequent SCAD was likely to or had occurred. A majority of patients (73%) feared a recurrent event; this anxiety was most pronounced in the early discharge period, compounded by the lack of information obtained on SCAD during hospitalization, but this fear seemed to dissipate over time (>1 year after dissection).

Short‐Term Follow‐Up: Tailoring Follow‐Up Care

Desiring follow‐up care in the 6 months after discharge was explicitly mentioned by 72% of the patient sample. It was common for patients to cite that they had several questions about their health status and prognosis that were left unanswered. Most dominantly, patients were not clear of the expectations for follow‐up appointments; some felt that the wait times for receiving a follow‐up appointment were exorbitant (>6 months). Patients also cited feeling uncomfortable discussing their SCAD event and recovery with a family practitioner, preferring instead to speak directly to a cardiologist. For others, the apparent spontaneous nature of the event precipitated a sense of helplessness, and therefore some chose not to pursue follow‐up care. Patients (72%) felt strongly that follow‐up care should be tailored to the needs of patients with SCAD. Specifically, programs and services that acknowledged the unique cardiovascular, psychological, and demographic profiles of patients with SCAD were desired. Patients were steadfast that clinical guidelines and protocols that are specific to the SCAD health care pathway should be developed, promoted, and closely followed. Several patients did not complete cardiac rehabilitation (51.7%) because it was either not available or was deemed inaccessible due to time limitations or distance. Of note, some patients felt that cardiac rehabilitation was not personally required because their cardiac event did not result from any identifiable cardiovascular risk factors that could be remediated during rehabilitation; despite this observation, however, many continued to advocate for cardiac rehabilitation for patients with SCAD. Patients desired a focus on anxiety and stress reduction in addition to physical health behavior modification in cardiac rehabilitation.

Long‐Term Management

As many patients were >1 year postdiagnosis at the time of the interview, it was possible to elucidate the factors that optimized patients' ongoing recovery. When asked about the factor that was most important to recovery, a focus on improving mental health and emotional coping strategies figured prominently in the discussion, and professional mental health services were requested. A smaller percentage noted that their SCAD forced them to confront more existential questions, such as their own death. Nearly a fifth of the sample cited that recovering physically was paramount, and another fifth reported that family support was the most influential in optimizing their recovery. Accessing SCAD‐specific information and peer support were cited as being the most helpful factors contributing to recovery by a smaller percentage of the sample; formal rehabilitation programming was also cited by a smaller sample of patients.

Discussion

This research described the results from a national, multisite study aimed at elucidating the key factors in recovery at distinct stages on the SCAD health care pathway from patients' perspectives. This is the first multicenter evaluation of SCAD informed by patients' narratives that highlights patients’ needs across the diagnosis and recovery trajectory. The Figure displays our provisional recommendations for clinical practice derived from our results, which may help to inform clinical practice guidelines for this patient population.

Figure . Clinical practice recommendations across the SCAD health care pathway.

SCAD indicates spontaneous coronary artery dissection.

Prevailing or acute emotional stresses at the time of the SCAD event was reported by 56% of participants in the current study. This is consistent with studies from patient registries from Canada (N=204, 91% women, 48.5% reported emotional distress; N=168, 92% female, 40.5% reported distress) ¹¹ and 4 Arab Gulf countries (N=83, 51% women, 49% reported emotional distress) ³² but higher than a New Zealand sample derived from retrospective data (N=50, 90% female, 30% reported emotional distress). ³³ Reports of a physical stressor were much lower in this qualitative study than reported in other research (3% versus 29%). ⁹ It is possible that the open‐ended nature of this qualitative study contributed to the underreporting of a physical stressor before the SCAD in comparison to other observational research (ie, no specific definitions were provided on what constituted a physical stressor). Patients' reports of the origin of emotional distress were varied but often included health, family/relationship, occupational, financial, and lifestyle stresses. An important nuance that was identified in the interviews was that despite identifying emotional distress as a potential precipitating factor, many patients did not evaluate this stress as a risk factor for cardiovascular disease (CVD). This had implications on the patients' identification of the SCAD event, as those who attributed the event to emotional distress were more likely to associate symptoms to noncardiac causes and delay seeking care. It is now well established that emotional distress can negatively affect cardiovascular risk factors, risk for incident CVD events, and cardiovascular prognosis over time. ³⁴ , ³⁵ Depression, anxiety, and chronic stress, for example, increase the risk of incident myocardial infarction by 23% to 27%, ³⁶ independent of demographic and biological risk factors and health behaviors. Although messaging on the prognostic effects of emotional distress on CVD has intensified over the past 2 decades, ³⁷ our results indicate that this messaging could be bolstered in the public en masse and particularly among female patients with nonobstructive coronary artery disease, such as SCAD. ³⁸ , ³⁹ This may improve the identification of cardiac symptoms and reduce feelings of uncertainty associated with recovery, which appears especially pertinent among patients with SCAD. ²¹ , ²²

Participants in this study, the majority women, reported diverse symptoms of SCAD that varied in duration and intensity. Symptoms reported did not differ from those reported in extant literature on SCAD, ⁴⁰ with chest pain as the chief symptom. ⁴¹ Other cardiac symptoms reported (eg, jaw pain, nausea, dizziness) are also consistent with the broader literature in women presenting with myocardial infarction. ⁴² , ⁴³ Sex differences in the clinical presentation of ACS, ⁴⁴ particularly among younger women, ⁴⁵ continue to be elucidated, but studies broadly indicate that women are more likely to experience a greater number and variation in symptoms than men. ⁴³ Similar to a recent study, ⁴² our study found that the variability in symptoms was associated with misattributing symptoms to noncardiac causes, downplaying the severity and risk associated with the symptoms and delaying access to acute care. Further, about a third of patients in this current study perceived that health care providers did not adequately assess the seriousness of the SCAD upon presentation or misattributed their symptoms to a noncardiac cause. This was mainly reported by patients who were >3 years postdiagnosis but is corroborated by other, more recent qualitative research on SCAD in which participants reported that they “felt like a fraud.” ²² Of note, the small number of men consulted in this study felt that their symptoms were accurately attributed as a CVD event by health care providers upon presentation to emergency services. Rapid advancement in SCAD knowledge translation, predominantly through observational research, has produced an improved understanding of its pathogenesis, presentation, diagnosis, and management among providers. ¹⁵ In fact, SCAD publications exponentially increased ≈30% annually from 2005 to 2019. In addition, there have been several efforts to educate health care professionals and members of the public to recognize the ways in which women present with ACS and how these symptoms may differ from those of men (eg, Go Red for Women Campaign; Women's Healthy Heart Initiative; Canadian Women's Heart Health Alliance ATLAS). It is unclear whether these advances, both SCAD specific and broader sex differences in CVD, have contributed to more accurate detection and diagnosis among women. ⁴⁶ Health care providers working with patients with SCAD continue to call for more SCAD‐specific training. ²⁷ In addition, it is likely that broader education on sex differences in CVD presentation and management will influence improvements in SCAD clinical care, but this has not yet been examined.

Our current research highlights that while knowledge is accumulating on SCAD in the acute health care provider community, communication to patients is still lacking. The data assert that patients felt ill‐informed about the prognosis of SCAD and appropriate steps for self‐management, which has been cited by patients in other countries as well. ²¹ , ²² Future large‐scale quantitative research is required to confirm information priorities among patients with SCAD and to investigate the preferred method and timing for receiving this information. In addition, due to the lack of information directly relayed to patients, it was common for participants in this sample to rely on online resources and the anecdotal experiences of other SCAD survivors to inform their steps for recovery. We noted that the use of online tools was more common among patients who experienced a SCAD during the pandemic, as access to in‐person informational and social support was restricted. The propensity to consult online resources, particularly social media and peer support discussion forums, has been noted in previous research on the basis of patient and health care provider accounts ²¹ , ²² , ²⁷ and expert opinions. ¹ , ⁴ , ⁶ Patients noted the risks of these peer‐led initiatives, however, such as misinformation and intensifying fears. With this in mind, structured online educational tools and joint initiatives with health care professionals and peers could be leveraged to increase awareness and knowledge of SCAD and promote connectedness among patients. Several resources have been developed (eg, SCAD Warrior, SCAD Alliance), but formal evaluations of their effectiveness have not yet been conducted.

The results from this study reinforce existing qualitative research that emotional distress, particularly anxiety, is pervasive after SCAD and continues to be an influential factor tied to patients' recovery in the long term. ³¹ , ³² Findings from cross‐sectional research on patient anxiety in SCAD populations is currently mixed. For example, Smaardijk et al ⁴⁷ reported that postevent anxiety is low (12%; N=172; 100% women), while other studies indicate that 37% of patients with SCAD (N=158; 97% women) take antidepressant or anxiolytic medications ¹⁰ and that upwards of 70% of patients score above thresholds indicating an anxiety disorder after SCAD (N=14; 100% women). ¹² In the present study, 17% of patients reported being diagnosed with an anxiety disorder after SCAD, and several more reported subsyndromal symptoms. Preliminary case‐matched research that compares anxiety among patients with SCAD and those with non‐SCAD ACS indicates that twice the number of patients with SCAD have elevated scores on anxiety measures immediately after the event ⁴⁸ , ⁴⁹ ; this magnitude of difference persisted after participating in cardiac rehabilitation in 1 sample ⁴⁹ but was not sustained 3 years after the event in another sample. ³ As results in previous studies are equivocal, future longitudinal and comparative examinations are necessary to determine the unique effects of SCAD on psychological distress over and above salient demographic factors (ie, younger age and female sex). Notwithstanding, results from this qualitative study reiterate the pervasiveness of distress after the event and indicate that contemporary programming in the acute recovery phases of SCAD may not be meeting the needs of patients with elevated levels of distress, which perpetuates worries in the long term. Interventions that target anxiety more directly may be particularly helpful for this patient population. Of note, there were no meaningful sex differences highlighted in the study with respect to prevailing emotional distress after SCAD. This qualitative observation differs from the abundant research in broader CVD contexts that reports that postevent anxiety is more prevalent in women than men. ⁵⁰ This could be attributed to disproportionate representation of men within this study (N=10). It is possible, however, that among men, experiencing a SCAD could be more anxiety provoking than other forms of CVD. This hypothesis would need to be tested in future research with appropriate representation from male participants, as previous observational research on anxiety after SCAD has included very small samples of men (0%–3%).

In addition to anxiety, recent qualitative work ²² has noted several psychosocial constructs that may characterize the emotional distress experienced by patients with SCAD soon after their event, including shock, confusion, uncertainty, unfairness, loss and grief, and guilt. Our qualitative data affirm the significance of these constructs, not only in the early phases of recovery but also over time. The magnitude and variability of patients' emotional distress after SCAD has not yet been illuminated among larger patient samples, and most of the research to date is cross‐sectional and retrospective and used patient registries for recruitment, which may have limitations in generalizability. Further, to date, only a small number of psychological constructs (anxiety, depression, posttraumatic stress disorder, resilience, mental quality of life, perceived stress) have been investigated in SCAD‐focused research. Given these limitations, the level of emotional distress and factors predicting elevated distress are not yet known and remain an important priority for future research given the relevancy of distress to patients' functioning after an acute cardiac event. ⁵¹ Our qualitative work identified that negative psychosocial factors were accentuated in patients who are younger in age with unremarkable medical histories. It will be important for future research to clarify potential predictors of distress so that specific populations (eg, sex/gender, those with idiopathic SCAD; those with premorbid psychological distress) and surrogate outcomes (eg, decreasing patient confusion, reducing fear) can be prioritized accordingly in psychological interventions.

It is widely recommended that all patients with SCAD attend cardiac rehabilitation. ¹³ Unfortunately, cardiac rehabilitation referral and completion rates are currently low for the patient population with SCAD, ⁴ , ¹³ , ⁵² which was unfortunately substantiated in this study as less than half participated in cardiac rehabilitation. A systematic review ¹⁶ of physical and psychosocial recovery following discharge from hospital (N=28 studies; 4167 patients with SCAD) noted limited benefit of generalized cardiac rehabilitation for patients with SCAD as the programming was too restrictive, not applicable, or inaccessible. Patients in our study concurred with the results from this systematic review; they also highlighted the need for SCAD‐specific programming. It is plausible that a SCAD‐tailored cardiac rehabilitation program will improve enrollment, adherence, and outcomes, but future studies are required to clarify this hypothesis. To date, only 1 cardiac rehabilitation program tailored to patients with SCAD has been evaluated. ⁵² Modest improvements in patients' (N=70 women with SCAD) exercise capacity (P<0.001) and distress (P=0.046) were cited, and fewer long‐term major adverse cardiovascular events (4.3%) were observed in patients with SCAD when compared with a non‐SCAD cardiac rehabilitation cohort (P<0.001). Only 1 small (N=7) SCAD‐specific psychological intervention after SCAD exists in the literature. ⁵³ Patients' anxiety and depression scores worsened over the 8‐week intervention but improved after 3‐month follow‐up. As a comparison group was not employed, it is unclear if improvements were due to this or other interventions or simply the passage of time. The qualitative results in this study substantiate the potential value of SCAD‐tailored follow‐up programming to meet patients' needs and that these programs should emphasize emotional recovery in addition to physical rehabilitation. The desire for specialized programming was particularly pronounced among patients who were women and younger in age, which is similar to what was reported in recent studies ²² , ⁵⁴ ; future research should assess whether a SCAD‐specific program benefits patients over and above a demographically tailored intervention that is inclusive to both atherosclerotic and nonatherosclerotic ACS. Robust experimental studies are required after researchers have identified interventions that are relevant, feasible, acceptable, and clinically impactful (eg, reductions in distress, lower SCAD recurrence and long‐term major adverse cardiovascular events) for this patient population.

Alongside the development and testing of specialized programming for patients with SCAD, addressing broader issues linked to poor cardiac rehabilitation participation may help to improve participation rates for patients with SCAD. Several barriers, including younger age, female sex, lower income and education, increased comorbidities, cost to participate, monolinguistic services, and reduced access to transportation have been linked to low cardiac rehabilitation enrollment and adherence among patients with CVD. ⁵⁵ , ⁵⁶ It is possible that virtual‐based cardiac rehabilitation may be particularly advantageous for patients with SCAD, as has been noted in broader ACS samples, ⁵⁷ as several patients with SCAD are younger women with occupational or caregiving responsibilities. In addition, based on our data showing limited enrollment in cardiac rehabilitation, there could be an improvement in education on the role of cardiac rehabilitation for medical staff and patients, especially for those with nonobstructive forms of coronary artery disease. Although SCAD‐specific interventions are limited and more tailored programming was desired, it is important to note that cardiac rehabilitation should continue to be recommended to all patients with ACS. This programming may help to alleviate distress as patients await follow‐up appointments with cardiology, which are currently in a backlog precipitated by the COVID‐19 pandemic. ⁵⁸ , ⁵⁹

Strengths and Limitations

This research has important implications for the identification and acute and long‐term management of patients with SCAD across the health care pathway, which has been previously unexplored in the literature. The results from this study provide context for clinical practice guidelines that are grounded in patient experience and will support the development of relevant and impactful interventions at several points on the patient trajectory. These results will also support cardiovascular and primary care centers to incorporate SCAD‐specific knowledge into clinical practices to enhance patient outcomes. Investigating patients' perspectives (1) provided a deeper explanation of constructs studied in previous quantitative research; (2) facilitated the generation of hypotheses for subsequent work, (3) identified potential clinical practice changes and interventional programming content, and (4) highlighted priorities for future research. Insights generated from the current research would not have been possible using a strictly quantitative (deductive) design.

Although steps for promoting the rigor and trustworthiness of the research were followed (Data S1), there are limitations to this research. Prototypical qualitative research does not aim to produce results that are generalizable in a statistical sense, as the sampling is not designed to be representative. Our approach, however, used strict purposive sampling criteria that aligned with several demographic and clinical characteristics of the patient population with SCAD, as informed by contemporary scientific statements. Therefore, the reporting of frequencies among each category was deemed appropriate. Despite our best attempts to purposefully recruit patients representing various ethnic or racial groups, the participant sample comprised predominantly White individuals (93.2%). In addition, the sample was well educated with a median income above population norms, and participants resided in medium to large cities. Of note, it is possible that the participants who chose to participate in the study were more affected by their SCAD than those who declined participation. The possibility of selection bias may have inflated the rates of recurrence reported in this study. Furthermore, most patients were treated at cardiovascular care centers with cardiac rehabilitation programs run by health care professionals who have been educated on SCAD. Seeking perspectives from those traditionally underrepresented in cardiovascular research, such as patients with lower levels of education and income, racialized and Indigenous populations, patients from geographically diverse areas (eg, rural communities), and smaller centers with limited SCAD knowledge or exposure, remains an important priority for SCAD research en masse. All interviews were conducted at 1 time point only, and the mean time since diagnosis was >2 years, which increases the likelihood for recall bias. However, it provided a picture of their experience across the care trajectory, which was not previously done. In the qualitative interviews, all participants were asked to discuss the potential factors that may have led to the SCAD, which introduces the possibility of attribution bias. To reduce the effects of this bias, we also asked patients to discuss the events/experiences leading up to their event more broadly. Larger, prospective observational, and comparator studies (ie, demographically similar patients with non‐SCAD ACS) will be needed to confirm the generalizability and uniqueness of the key features identified in the SCAD health care pathway. Longitudinal research may be helpful for revealing patients' experiences and needs at distinct time points on the trajectory of patients with SCAD.

Conclusions

In conclusion, the results provide a detailed description of SCAD across the health care pathway, grounded in patients' experiences. The results confirm that the awareness and detection of SCAD was low among patients, complicated by the range in symptoms and underappreciation of emotional distress as a significant risk factor for SCAD incidence. The data attest that among the acute health care community, SCAD is an increasingly recognized and understood form of ACS, but its prognosis and approaches for self‐management are poorly communicated to patients. Anxiety is pervasive, particularly in the early‐discharge period and among younger patients with unremarkable medical histories. Short‐ and long‐term follow‐up is desired. Conventional cardiac rehabilitation and other secondary prevention programming, including informational and psychosocial interventions, are recommended but are not currently meeting the perceived unique needs of patients with SCAD. Taken together, our research has important implications for the identification, and acute and long‐term management of patients with SCAD. Additional work is required to validate these findings and investigate hypotheses generated from this research among larger and more diverse samples of patients, both within Canada and internationally.

Sources of Funding

The project was funded by a Heart and Stroke Foundation of Canada Bridge Grant (G‐20‐0029434).

Disclosures

None.

Supporting information

Data S1

Table S1

Figure S1