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www.jcrpjournal.com SCAD Survivor Experiences 1
Spontaneous coronary artery dissection (SCAD) is an in-
frequent, nonatherosclerotic type of acute myocardial
infarction (AMI). Spontaneous coronary artery dissection
occurs when a coronary vessel develops a tear or hematoma
Spontaneous Coronary Artery Dissection (SCAD)
FEMALE SURVIVORS’ EXPERIENCES OF STRESS AND SUPPORT
Tina Pittman Wagers, MSW, PsyD; Courtney J. Stevens, PhD; Kaitlin V. Ross, MSEd;
Katherine Kelly Leon, MS; Kevin S. Masters, PhD
Original Investigation
Author Affiliations: Department of Psychology and Neuroscience,
University of Colorado Boulder (Drs Wagers and Stevens); Graduate School
of Professional Psychology, University of Denver, Denver, Colorado
(Dr Ross); SCAD Alliance, Alexandria, Virginia (Ms Leon); and Department
of Psychology, University of Colorado Denver (Dr Masters). Dr Stevens is
now affiliated with the Dartmouth Centers for Health and Aging and the
Department of Psychiatry at the Geisel School of Medicine at Dartmouth
and Dartmouth-Hitchcock Medical Center, Lebanon, New Hampshire.
The authors declare no conflicts of interest.
Correspondence: Tina Pittman Wagers, MSW, PsyD, Department of
Psychology and Neuroscience, University of Colorado Boulder, 345 UCB,
Boulder, CO 80309 (pittmanw@colorado.edu).
Copyright © 2018 Wolters Kluwer Health, Inc. All rights reserved.
DOI: 10.1097/HCR.0000000000000330
Purpose: Spontaneous coronary artery dissection (SCAD) is a
nonatherosclerotic type of acute myocardial infarction that pri-
marily affects young, healthy women without typical risk factors
for heart disease. Few investigations have examined psychosocial
variables in this population and none have looked at patient per-
ceptions of the experience and stresses associated with having a
SCAD event or the resources currently available to SCAD sur-
vivors. This investigation describes survivors’ subjective expe-
riences of SCAD. Participants also provided information about
types and helpfulness of resources available to them post-SCAD,
including cardiac rehabilitation.
Methods: Participants were recruited online and completed a
one-time questionnaire.
Results: Participants (n = 409) completed a questionnaire con-
cerning their experiences with their SCAD event in the 1 y and
2 wk prior to the SCAD event. Their responses reflected mod-
erate to high perceptions of stress. Participants experienced the
SCAD event as highly stressful and frightening and their heart
health presents as a moderate-severe source of current, post-di-
agnosis stress. Spontaneous coronary artery dissection–based in-
formational support was frequently rated as inadequate, where-
as other supportive resources varied in their helpfulness and
accessibility. Participants reported positive experiences in cardiac
rehabilitation and strong interest in SCAD-specific, professional-
ly led, online patient education and support groups.
Conclusions: This study is the largest to date investigation
of SCAD survivors and their experiences in this understudied
and perhaps underrecognized condition. Opportunities for re-
searchers and providers to develop, tailor, and disseminate
SCAD-specific interventions are discussed.
Key Words: acute myocardial infarction • cardiac rehabilita-
tion • psychosocial factors • spontaneous coronary artery dis-
section (SCAD) • women’s cardiovascular disease
where blood can accumulate and interrupt coronary blood
flow to the myocardium.1 A recent investigation estimated
the risk of recurrence, death, AMI, and heart failure as 47%
in the 10 y following an initial SCAD.2 The precise etiology of
SCAD is unclear, though there is evidence that SCAD may be
precipitated by a confluence of factors including peripartum
or menopausal status, hormone therapy, connective tissue
disease, emotional stress, and intense physical exertion.1,3,4
No definitive treatment guidelines existed for this subset of
AMI patients at the time of the current investigation.2,3
Spontaneous coronary artery dissection was previously
thought to be rare; as recently as 2012, the prevalence of
SCAD was estimated to be between 0.07% and 1.1% of
all coronary angiograms.2 Current research has identified
SCAD among 1% to 4% of patients undergoing cardiac
catheterization3 and 24% to 40% of AMIs among women
younger than 50 y.1,3 Young, physically active, otherwise
healthy women are disproportionally impacted by SCAD3;
current estimates suggest that 80% to 92% of SCAD survi-
vors are women aged 42 to 52 y,1–4 which is notably younger
than the typical (ie, non-SCAD) female AMI patient.5
Although overall death rates attributable to AMI have
declined significantly in the past decade, this trend has not
been observed among young women aged 35 to 54 y. This
discrepancy may be due to different pathophysiology of
AMI in this patient demographic, as well as gendered psy-
chosocial stressors that interact with health behaviors and
biology (eg, disproportionate vulnerability to emotional
stress).5 Anecdotal reports suggest numerous psychosocial
precursors and consequences of SCAD, but there is a pauci-
ty of empirical data regarding SCAD survivors’ perceptions
of affect, stress, or social support. Among the few investi-
gations conducted to date, a trend has been observed for a
relationship between SCAD and heightened negative affec-
tivity. Liang and colleagues6 found high rates of depression
and anxiety symptomatology among a sample of 158 SCAD
survivors. Notably, symptom severity was highest among
younger females and women who experienced peripartum
SCAD.6 Another study found rates of anxiety and depres-
sion symptomatology to be comparable between SCAD and
typical AMI patients.7
Strong links exist between stress and AMI broadly,8,9 and
social support is widely recognized as a promoter of more
favorable health outcomes following a major medical diag-
nosis. Prior work has found associations between perceived
inadequate social support and negative health outcomes,
including suppressed immune functioning, prolonged re-
covery from illness or injury, increased risk of disease, and
early mortality.10–13 Conversely, perceived effective social
support has been shown to reduce hypothalamic-pitu-
itary-adrenal-axis reactivity14 and reduce depression severi-
ty among AMI patients.15
Cardiac rehabilitation (CR) is a common referral for
AMI patients, and prior work with typical coronary heart
Copyright © 2018 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
2 Journal of Cardiopulmonary Rehabilitation and Prevention 2018;00:1-6 www.jcrpjournal.com
disease patients has found evidence for reduced stress and
improved medical outcomes when stress management skills
are imbedded within CR programing.16 However, only
a handful of studies have examined the impact of CR on
patients’ physical and emotional recovery from SCAD.17–19
More information regarding SCAD patients’ experience
with CR is needed to better meet the needs of this popula-
tion subset.
Spontaneous coronary artery dissection presents diag-
nostic and treatment challenges because of its unique patho-
physiology and its presentation primarily among younger
women. Informed by aforementioned gaps in the literature,
the present study has 3 central aims: (1) to examine the
role of stressful events during both the year and the 2 wk
prior to the participants’ first/initial SCAD; (2) to assess pa-
tient perceptions of stress associated with SCAD pre- and
post-diagnosis; and (3) to assess patient perceptions of the
helpfulness of post-SCAD resources, especially CR.
METHODS
PARTICIPANTS
Participants were recruited by responding to an online an-
nouncement of a SCAD questionnaire survey that linked
to a Qualtrics survey. Recruitment announcements were
widely distributed on social media outlets (eg, Facebook,
Twitter) by the SCAD Alliance, a nonprofit patient advo-
cacy and support group. Advertisements indicated that the
study team was interested in contacting SCAD survivors to
better understand their experience with SCAD, as well as
their immediate and long-term needs post-SCAD. Recruit-
ment materials were also distributed to other cardiovascular
patient support organizations (eg, Mended Hearts, Ameri-
can Heart Association, and Women’s Heart Alliance), car-
diology groups with whom members of the SCAD Alliance
collaborate, and cardiologists who treat SCAD patients. A
link to access the online survey was provided at the end of
the advertisements.
Eligible respondents were required to be at least 18 y of
age and had experienced at least 1 SCAD by self-report.
Medical verification of SCAD diagnosis was not required
for entry into this study. Because there were too few men
represented in the sample (n = 9) to have confidence in the
generalizability of these data or to make meaningful com-
parisons between male and female experiences, and because
33 participants declined to identify their gender, only the
data from the 367 female SCAD survivors are reported in
the results.
PROCEDURES
All procedures were approved by the University of Colorado
Boulder institutional review board. Recruitment announce-
ments were widely distributed on social media (eg, Face-
book, Twitter) by SCAD Alliance, a nonprofit patient advo-
cacy and support group. Announcements indicated that the
study team was interested in hearing from SCAD survivors
to better understand their experiences and their immediate
and long-term needs post-SCAD. At the start of the online
survey, participants read an informed consent document and
were required to provide consent in order to participate.
MEASURES
Stressful Life Events
The Social Readjustment Rating Scale20 was developed
to measure stressful life events experienced over the past
year and has been shown to correlate positively with ill-
ness.21 The original scale includes 43 stressful life events
(eg, “death of spouse,” “dismissal from work,” “change
in frequency of arguments”). Although the scale has been
widely used, it does not account for individual perceptions
of stressful events. To make the scale more accessible to
participants and to capture participants’ perceptions of
stress, revisions were made to the original scale, resulting
in a 16-item scale. First, 9 original scale items were col-
lapsed (eg, from the original scale, 4 items, “major change
in financial state,” “took on a mortgage,” “foreclosure on
mortgage,” and “taking on a loan” were reduced to a single
item, “change in financial state”). Second, participants were
asked about stressful events that occurred in the last year
and in the 2 wk prior to their first or only SCAD in order
to gather information about long- and short-term stressors
present in participants’ lives prior to SCAD. Third, 2 items
of possible relevance to SCAD survivors were added: “con-
flict with a close family member or friend” and “extreme
or unusual physical exertion” in the 2 wk prior to the inci-
dent of SCAD. Finally, participants rated their experience of
each event using a 10-point scale ranging from 1= “not at
all stressful” to 10 = “extremely stressful.”
SCAD-Specific Stress Ratings
Three items were developed to specifically assess partic-
ipants’ subjective SCAD experiences. Participants were
asked the following: (1) “In the context of other life events
you have experienced, how stressful do you believe your
SCAD was?” and (2) “To what extent does your heart
health continue to be a source of stress for you?” Partici-
pants responded to these items using a 10-point scale rang-
ing from 1 = “minimally stressful” to 10 = “maximally
stressful.” A third open-ended item asked participants to
“describe the experience of SCAD using 1 word.”
SCAD-Specific Information
Two items assessed participants’ opinions about the in-
formation they received about SCAD following diagnosis.
Specifically, participants were asked to report (1) what
sources of information they were provided by their pro-
vider about SCAD at the time of their original diagnosis,
(2) how they would rate the adequacy of the information
they received using a categorical response format: “ad-
equate/easy to understand,” “insufficient/inadequate,”
or “too much/too difficult to understand,” and (3) the
most helpful SCAD information sources they had found
post-diagnosis.
Post-SCAD Resources/Referrals
Participants reported the resources they were referred
to post-SCAD (eg, counseling, stress management, CR)
and how helpful they perceived each resource to be on a
10-point scale ranging from 1 = “Not at all helpful” to
10 = “Extremely helpful.” Participants were also given
the opportunity to provide additional comments regarding
their experience with these referral sources and to report
their interest in SCAD-specific patient psychosocial educa-
tion and support groups on a 10-point scale ranging from 1
= “Not interested” to 10 = “Extremely interested.” In ad-
dition, participants reported their preferred format for such
a group (ie, in-person, online, with a professional leader,
with a peer leader).
STATISTICAL ANALYSIS
Descriptive statistics only were reported. These included
number and/or percentage or mean ± standard deviation.
Copyright © 2018 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
Table 1
Social Readjustment Rating Scale Ratings: 1 y and 2 wk Prior to First (or Only) SCAD Eventa
Stressful Life Eventsb1 y Prior to First (or Only) SCAD 2 wk Prior to First (or Only) SCAD
Death of a close family member or friend 68 (19) 7.79 ± 1.75 22 (6) 7.95 ± 1.79
Divorce or separation from spouse/partner 24 (7) 8.22 ± 2.41 6 (2) 8.00 ± 2.00
Personal injury or illness 68 (19) 6.57 ± 2.22 46 (13) 6.91 ± 2.20
Change in employment status/responsibilities 121 (33) 7.13 ± 2.16 57 (16) 7.71 ± 1.82
Change in employment status for spouse/partner 39 (11) 6.13 ± 2.65 9 (3) 7.22 ± 2.05
Change in health of family member 90 (25) 7.44 ± 2.01 39 (11) 7.89 ± 2.09
Pregnancy 61 (16) 5.69 ± 2.71 42 (11) 6.19 ± 2.71
Intimate partner conflict 88 (24) 7.56 ± 1.64 68 (19) 7.30 ± 1.75
Conflict with close family member or friend 67 (18) 7.52 ± 1.97 51 (14) 8.04 ± 1.92
Change in financial state 65 (18) 7.09 ± 1.95 27 (7) 7.22 ± 1.60
Son or daughter leaving home 38 (10) 6.03 ± 2.52 11 (3) 7.00 ± 2.72
Begin or end school 25 (7) 6.36 ± 2.38 18 (5) 6.22 ± 2.56
Change in living conditions or residence 59 (16) 6.86 ± 2.37 18 (5) 7.78 ± 1.40
Change in recreation or social activities 44 (12) 5.32 ± 2.79 14 (4) 4.79 ± 2.69
Legal problems 17 (5) 8.00 ± 1.66 6 (2) 8.00 ± 1.67
Extreme or unusual physical exertioncn/a n/a 119 (32) 6.3 ± 2.76
Abbreviations: n/a, not available; SCAD, spontaneous coronary artery dissection.
aData reported as number (%) or mean ± standard deviation.
bLife event stressfulness rated on a 10-point Likert-type scale ranging from 1 = “Not at all stressful” to 10 = “Extremely stressful.”
cRatings for “extreme or unusual physical exertion” only collected for the 2-wk prior time period prior to first (or only) SCAD.
www.jcrpjournal.com SCAD Survivor Experiences 3
RESULTS
As expected, the sample was predominantly female (97.6%
of participants who reported their gender on the survey).
Age at the time of first SCAD ranged from 26 to 71 y
(44.55 ± 8.82 y). The modal response for age at the time of
first SCAD was 37 y, and the median response was between
43 and 44 y of age, nearly at the mean. Participants re-
ported experiencing between 1 and 4 SCAD events in their
lifetimes (1.26 ± 0.55), and time since last (or only) SCAD
ranged from 2 wk to 27 y (2.68 y ± 3.68 y); however, 75%
of the sample were within 3 y, 65% were within 2 y, and
44% were within 1 y of their most recent SCAD at the time
of the survey. In addition, although the average amount
of time since last (or only) SCAD was more than 2 y, the
modal response on this construct was 1 mo. A total of 409
individuals provided informed consent. For the participants
for whom geographical data was available (n = 379), the
majority of participants were from the United States (n =
230), but responses were also collected from survivors re-
siding in Europe (n = 63), Australia or New Zealand (n =
50), Canada (n = 35), and South Africa (n = 1).
Stressful life events experienced 1 y and 2 wk prior to the
incident SCAD are reported in Table 1. Interpersonal events
were prominently endorsed. The most commonly cited
stressful event experienced 1 y prior to the first SCAD was
“change in employment or responsibilities at work,” and the
next 3 most frequently cited events were “change in health of
a family member,” “intimate partner conflict,” and “death of
a close family member or friend.” Regarding sources of stress
in the 2 wk prior to SCAD, the most commonly endorsed
item was “extreme or unusual physical exertion.” The next
3 most frequently cited events were “intimate partner con-
flict,” “change in employment status/responsibilities,” and
“conflict with a close family member or friend.”
On average, participants experienced the SCAD itself as
highly stressful (mean stress rating = 8.62 ± 1.79) and re-
ported that their heart health continues to be a source of stress
in their daily lives (6.81 ± 2.42). Notably, when asked to de-
scribe the experience of SCAD in 1 word, the most commonly
reported descriptor category was “scary” (30.24%), followed
by “surprising” (13.90%), “life changing” (12%), “traumat-
ic” (10.35%), and “uncertain” (7.63%).
Table 2 reports SCAD-specific information received or
obtained post-diagnosis. A majority of participants reported
receiving “verbal information from their doctor” (66%) at
the time of their SCAD diagnosis, but more than one-quarter
reported receiving “no information about SCAD” (26%).
A substantial majority of participants (82%) reported that
the quality of the information they received at the time of
SCAD diagnosis was “insufficient/inadequate.” Far fewer
(17%) reported that the information was “adequate/easy to
understand.” More than half of the sample (52%) identified
“internet searches” as the most helpful SCAD information
source they found post-diagnosis. In contrast, only 9% of
participants identified information provided by “doctors
and/or other health care professionals” as most helpful.
Table 3 displays the referrals participants received post-
SCAD, as well as average helpfulness ratings: 72% of sur-
vey participants were referred to CR, and the 2 highest
helpfulness ratings were attributed to CR and “exercise
programs other than CR,” which participants described as
customized exercise programs. The average helpfulness rat-
ing for these customized exercise programs was similar to
that reported for CR (7.00 vs 6.84).
Participants reported strong interest overall in participat-
ing in a SCAD-specific patient psychosocial education or
support group with a notable preference for online patient
groups with a professional leader. Far fewer participants
reported interest in an online or in-person peer-facilitated
group (see Table 3).
DISCUSSION
Spontaneous coronary artery dissection is an understudied
cardiac event that is more prevalent among young women
who typically do not display traditional heart disease risk fac-
tors. Unfortunately, there remains a dearth of data address-
ing the psychosocial experiences of this unique group. The
goals of this study were to describe the experience of stress
Copyright © 2018 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
Table 2
Spontaneous Coronary Artery Dissection–Specific
Information Received or Obtained Post-Diagnosis
n (%)
Information provided by provider at the time of SCAD diagnosisa
Verbal information from medical provider 265 (72)
No information about SCAD 97 (26)
Written information from a SCAD- or heart-focused
organization (eg, SCAD Alliance, American Heart Association)
45 (12)
Scientific papers about SCAD 16 (4)
Information about a cardiovascular/heart disease other than SCAD 9 (3)
Recruitment information for SCAD-related research study 5 (1)
Information about SCAD obtained from the internet 5 (1)
Information from other sources not listed 5 (1)
Perceived quality of information received from provider at the time of diagnosis
“Too much/too difficult to understand” 2 (0.5)
“Adequate/easy to understand” 64 (17)
“Insufficient/inadequate” 299 (82)
Most helpful sources of SCAD information obtained post-diagnosis
Internet search 191 (52)
Support/education associations 97 (26)
Academic/professional journal articles 36 (10)
Doctor and/or other health care professionals 32 (9)
Facebook page for SCAD survivors 7 (2)
Other survivors’ word of mouth 4 (1)
Abbreviation: SCAD, spontaneous coronary artery dissection.
aPercentages not cumulative because participants were asked to select all options that
applied.
Table 3
Referral Resources and Preferred Post-SCAD Treatmentsa
Perceived Program
Helpfulnessb
Referral resources offered post-SCAD
Cardiac rehabilitation 265 (72) 6.84 ± 3.06
Counseling 91 (25) 6.25 ± 2.70
Heart-specific support groups 59 (16) 5.64 ± 3.11
Stress management 36 (10) 5.97 ± 2.61
Exercise programs other than cardiac
rehabilitation
25 (7) 7.00 ± 3.06
“Other” sources of support 9 (3) 4.00 ± 3.37
Interest in psychosocial interventions post-SCAD
Online patient education/support group
with a professional leader
168 (46) …
In-person patient education/support
group with a professional leader
99 (27) …
Online peer-facilitated patient education/
support group
29 (8) …
Not interested in participating in a
psychosocial support group
31 (8) …
In-person peer-facilitated patient
education/support group
25 (7) …
Interested in “other” psychosocial
support group not listed
10 (3) …
Abbreviation: SCAD, spontaneous coronary artery dissection.
aData reported as number (%) or mean ± standard deviation.
bProgram helpfulness rated on a 10-point Likert scale ranging from 1 = “Not at all helpful”
to 10 = “Extremely helpful.”
4 Journal of Cardiopulmonary Rehabilitation and Prevention 2018;00:1-6 www.jcrpjournal.com
prior to, during, and after SCAD, as well as the kinds of, and
preferences for, supportive resources for patients post-SCAD.
Stress experienced at work and among family, negative life
events, and deficient social networks are all known to contrib-
ute to risk for cardiovascular disease among women.22,23 The
present study is only suggestive in this regard, but the finding
that SCAD patients experienced similar psychological stress-
ors prior to their SCAD as what has been observed among
female patients with cardiovascular disease more broadly
warrants attention. Post-SCAD, respondents described their
heart health as an ongoing source of worry and stress, consis-
tent with the few investigations previously conducted on the
relationship between SCAD and negative affectivity.6,7
The possible role of intense physical exertion in relation
to SCAD has been noted elsewhere,1,3,5 and our finding that
nearly one-third of the sample engaged in extreme or un-
usual physical exertion in the 2 wk prior to their SCAD fur-
ther underscores the possibility of a connection between in-
tense physical exertion and SCAD. A recent study by Smyth
and colleagues9 found associations between exertion, stress,
and AMI but did not specify whether SCAD survivors were
represented in the sample. Future work should seek to fur-
ther elucidate the pathophysiological mechanisms that link
these factors in SCAD and AMI more broadly.
In general, participants reported that the information
they received from their providers was “insufficient/inade-
quate,” which may reflect providers’ relative unfamiliarity
with SCAD. As a result, survivors may seek information
on the internet. In the present study, more than half of the
sample indicated internet sources as the most helpful SCAD
resources obtained post-diagnosis. Our results suggest that
SCAD survivors are searching for more informational sup-
port than they can currently access, which may have import-
ant implications for their post-SCAD stress and coping strat-
egies. Health literacy, the degree to which individuals can
obtain, process, understand, and apply health-related infor-
mation, is associated with better health outcomes, improved
patient compliance, and reduction of health care costs.24 To
this end, education of health care personnel who interact
with SCAD patients is critical, as is the provision of accessi-
ble, thorough, and accurate didactic materials for survivors.
Among our sample, CR programs were the most common
referral source and were perceived as quite helpful by many
participants, consistent with previously cited reports finding
both physical and emotional benefits of CR for SCAD survi-
vors.17–19 Nonetheless, some participant comments revealed
that the focus of a “typical” CR program was not a good fit
for their age, gender, and/or prior activity level. For example, 1
participant noted that she felt “isolated during cardiac rehabil-
itation.” She continued, “I was female, much younger, athletic,
a non-smoker and otherwise very active and physically fit.”
Another noted that the activities in her CR program “were
geared towards your standard heart attack patient.” A third
participant observed that in her health care community, “all
of the help available is for elderly people with heart disease.”
FUTURE DIRECTIONS
The appeal of an online SCAD-specific program is in keep-
ing with the times. Support has been growing in the litera-
ture for web-based psychotherapy and psychoeducational
interventions.25,26 Spontaneous coronary artery dissection
survivors may be an ideal population for such a dissemi-
nation strategy, given their inclination to utilize internet re-
sources and potential to be widely dispersed geographically.
Chou and colleagues19 investigated a dedicated CR
program for SCAD patients, including a tailored exercise
program with psychosocial components, and found that
this resulted in improvements in SCAD patients’ chest
pain, exercise capacity, psychosocial well-being, and cardi-
ac events.19 The study by Chou et al, combined with the
results presented in this study, suggests that integration of
psychosocial services within a SCAD-specific CR program
may help address needs of this unique population.
Copyright © 2018 Wolters Kluwer Health, Inc. Unauthorized reproduction of this article is prohibited.
www.jcrpjournal.com SCAD Survivor Experiences 5
Taken together, these findings suggest that an ideal inter-
vention package would be one that considers SCAD survi-
vors’ preference for high-quality web-based resources (both
educational and therapeutic) and their desire for tailored CR
programs. Accessible educational content would provide the
most up-to-date literature regarding SCAD pathology, treat-
ment, and prognosis so as to bolster patients’ health literacy.
Similarly, therapeutic support (delivered by a professional via
the web platform) would implement evidenced-based strate-
gies for stabilizing negative effect, reducing stress reactivity,
and supporting commitment to daily appointments/goals
(eg, “attend CR”). Given the lack of consensus for post-
SCAD exercise guidelines, survivors may experience con-
fusion and stress regarding resumption of physical activity
post-diagnosis. Our findings suggest potential benefit for cre-
ating tailored exercise programs for SCAD patients enrolled
in CR. Uniting several lines of research, efforts are currently
underway to develop and test the feasibility and effectiveness
of an app-based intervention package for SCAD survivors.
LIMITATIONS
The population surveyed constituted a convenience sam-
ple of survivors who provided self-report information that
could not be corroborated by medical records; thus, the re-
sults are subject to potential recall bias or including patients
who may not have had SCAD. Another limitation of this
study is that the experiences of individuals whose SCAD
was ultimately fatal are not represented here. The use of
author-generated revisions to an assessment battery with-
out prior validation of changes may also be considered a
limitation. More broadly, there may be differences between
patients who frequent patient support group social media
sites (ie, the SCAD Alliance Facebook page) and those who
do not. However, given the low prevalence rates of SCAD,
social media sites may pose the most efficient way to reach
a wide range of survivors from around the world, as ev-
idenced by the present investigation. Finally, future work
in this area may benefit from a focused effort to sample
more broadly from male SCAD survivors so as to better in-
form treatment planning and meet the diverse needs of this
patient population. Despite these limitations, the present
study represents the largest examination to date of SCAD
survivors from around the world and their experiences with
a condition that has been grossly understudied.
CONCLUSIONS
Although not as rare as previously thought, SCAD is an un-
usual and understudied diagnosis. Results suggest that survi-
vors desire psychosocial support and high-quality, accessible
information about SCAD. Given reports from respondents re-
garding a lack of quality information received from health care
providers post-diagnosis, educating health care professionals
about SCAD is essential. As SCAD patients are routinely re-
ferred to CR, CR programs may have unique opportunities to
provide this population with tailored support, services, and
information. Future intervention work may elucidate current
questions regarding the feasibility and effectiveness of web-
based psychosocial support and educational resources intend-
ed to enhance patients’ post-SCAD adjustment.
ACKNOWLEDGMENTS
The authors express gratitude to Katie Sears Edwards,
PhD, Malissa Wood, MD, and Sam Hubley, PhD, who
provided feedback on earlier drafts of this article; and Jo-
anna Arch, PhD, and Kathleen Hoffman, PhD, for their
invaluable ideas on the survey itself. In addition, the au-
thors express their gratitude to the hundreds of SCAD sur-
vivors who participated in our survey, without whom this
study would not have been possible. Preparation of this
manuscript was supported in part by a National Cancer
Institute grant (F31CA180483, PI: Dr Stevens), and this
content is solely the responsibility of the authors and does
not represent the official views of the National Institutes
of Health.
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