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African Americans with Obsessive-Compulsive Disorder: An Update

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Send Orders for Reprints to reprints@benthamscience.ae 109
Current Psychiatry Reviews, 2016, 12, 109-114
REVIEW ARTICLE
ISSN: 1573-4005
eISSN: 1875-6441

African Americans with Obsessive-Compulsive Disorder: An Update

BENTHAM
SCIENCE

Monnica Williams*, Marlena Debreaux and Matthew Jahn

Department of Psychological & Brain Sciences, Center for Mental Health Disparities, University of Louisville,
Louisville, Kentucky, USA

Abstract: Although considerable strides have been made in understanding,

A R T I C L E H I S T O R Y

Received: February 02, 2016
Revised: April 30, 2016
Accepted: April 30, 2016
DOI:
10.2174/15734005126661606021241
46
diagnosing, and treating obsessive-compulsive disorder (OCD), not all groups have
benefited from these advances. OCD in ethnic and racial minority groups has been –
and continues to be – a neglected area of study. The last 15 years of research has shed
new light on OCD in African Americans, with some fascinating findings and new
questions to answer. This review describes barriers to treatment, such as low income,
reduced access to care, racism, and mental health stigma. Also addressed are cultural
differences in symptomology, test and measurement issues, and family factors in the
development and maintenance of the disorder. Implications of findings to date are
discussed, as well as unstudied areas of concern, such as treatment efficacy and
African American youth with OCD.

Keywords: African Americans, obsessive-compulsive disorder, ethnic differences, assessment.

1. INTRODUCTION Nonetheless, our own comprehensive review of the

literature found widespread and ongoing exclusion of various
Over the last two decades, there has been increasing
racial and ethnic minority groups [2, 3]. Among almost all
Current Psychiatry Reviews

attention focused on the issue of mental health disparities

[1]. Given the growing diversity of the United States
population, it is vitally important to ensure that the
population as a whole is as healthy as possible. The Institute
of Medicine and the National Institutes of Health (NIH)
thought it important to designate disparities in mental health
as a research priority, with The President's New Freedom
Commission on Mental Health, including eliminating
disparities as an essential goal for improving the mental
health care system [1].
Mental health disparities may be observed in relation to
the amount of attention given to mental health problems
between different populations, and the inequity between
populations with respect to quality, accessibility, and
outcomes of mental health care. Considerable progress has
been made in understanding, diagnosing, and treating
obsessive-compulsive disorder (OCD), but not all groups
have been helped by these advances, resulting in a notable
mental health disparity. OCD in ethnic minority groups has
been – and continues to be – a neglected area of scientific
inquiry [2, 3].
In 1993, the NIH issued a mandate necessitating that
funded research include adequate representation of racial and
ethnic minority groups [4]. Researchers were newly required
to include methods through which they would achieve
diverse samples in their proposal strategies.
*Address correspondence to this author at the Department of Psychological &
Brain Sciences, Center for Mental Health Disparities, University of
Louisville, Louisville, Kentucky, USA; Tel/Fax: (502) 852-2521;
E-mail: m.williams@louisville.edu
1875-6441/16 $58.00+.00
major OCD clinical trials conducted in North America,
ethnic minorities were either underrepresented or their
participation was not reported. African Americans comprised
less than 2% of all subjects in randomized trials. Researchers
failed to adhere to NIH guidelines regarding inclusion of
minority populations, yet inclusion of these groups is essential
to fully understanding OCD in non-White populations.
Minority inclusion in specialized treatment for OCD is
likewise inadequate. The DSM-IV field trial – one of the
largest studies of Americans with OCD – was devised to
better understand the phenomenology of OCD [5]. The study
drew from patients in specialty OCD clinics at several urban
sites, including Atlanta, Boston, New Haven, New York,
Philadelphia, Providence, and Toronto. However, out of 454
participants, only 2.8% were African American. We recently
examined the demographics of OCD patients over a 13-year
span at Rogers Memorial Hospital – which is one of the
largest residential treatment centers for OCD and found that
only 6.7% were ethnic or racial minorities, and only 0.9%
were African American [6].
1.1. African Americans and OCD
Earlier studies of non-clinical African American samples
noted differences in contamination anxiety and concerns
about animals [7]. These findings were interesting, but it was
unclear if this would be an important feature of OCD
symptomology in African Americans with the disorder. Very
few studies included African Americans diagnosed with
OCD, therefore only tentative conclusions could be drawn
from these student and community samples. Aside from a
© 2016 Bentham Science Publishers
110 Current Psychiatry Reviews, 2016, Vol. 12, No. 2
few case studies [8, 9], and one naturalistic study [10], prior
to 2008 there were no other published studies focused on the
phenomenology, assessment, or treatment of African
Americans with an actual OCD diagnosis.
It was hypothesized that low research participation
among African Americans was due to a lack of interest in
treatment, less impairment from OCD symptoms, or lower
prevalence rates [11]. One critical turning point in our
knowledge was the completion of the National Survey of
American Life (NSAL) epidemiological study, where it was
demonstrated that African Americans were suffering from
OCD in the exact same numbers as the larger US population,
and likewise experienced functional impairments, but were
less likely to receive treatment [12]. Even among those who
were able to access medical care, few received mental health
care, and only 20% were receiving an SRI medication [12],
which is the pharmacological first-line approach for OCD.
These findings were important, but created even more
questions. If there was no difference in prevalence, what
obstacles were keeping African Americans from receiving
treatment? Were African Americans experiencing different
types of symptoms, potentially leading to an incorrect or
missed diagnoses? Was there something about African
American culture that discouraged seeking treatment for
conditions like OCD? Were there barriers within the mental
health care system that made engaging in treatment difficult?
Such questions could only be answered through an in-depth
study of African Americans clinically diagnosed with OCD
[11].
1.2. Recruitment of African Americans
Careful study design was crucial for identification of a
population that by all accounts did not exist. Cultural factors
were an early consideration, as many African Americans are
uncomfortable participating in research due to ongoing
experiences of discrimination in medical contexts [13, 14].
There are cultural memories of abuse, such as the US Public
Health Service Syphilis Study at Tuskegee, which continues
to influence medical decision-making to this day [15]. In
addition many are aware of more current research abuses,
such as the Baltimore Lead Paint Study, which dispro-
portionately affected low-income African American families
[16].
In 2009, investigators at the University of Pennsylvania
(Penn) launched a study to better understand OCD in African
Americans, with cultural considerations in mind. To reduce
cultural fears associated with medical research, outreach
materials in the study minimized use of terms like
"research," in favor of "study" or "project." African
American therapists practicing in the community were hired
and trained to conduct the evaluations, with a subset of
participants reevaluated by expert Penn psychologists to
ensure fidelity. A combination of recruitment methods were
used, including the posting of advertisements in African
American newspapers, on the radio, on public transit, in
flyers, and on the Internet. Advertising materials consisted of
psycho-educational material outlining the symptoms of
washing or hoarding behaviors and unwanted thoughts, as
some potential participants may not have had previous
Williams et al.
knowledge that these behaviors were typical of OCD [17].
The research team made sure to include various African
American institutions in the recruitment of the participants
including a mental health program sponsored by an African
American church, a local chapter of a national mental health
advocacy program, a historically Black College/University
(HBCU), and a local professional organization of Black
psychologists [17].
The research team successfully identified and assessed 75
African American adults with OCD, which was the largest
such sample to date, and a substantial improvement over the
NSAL sample, where participants were evaluated by trained
lay people using computerized measures that only queried
for a subset of typical OCD symptoms [12].
1.3. Barriers to Treatment
Data from the Penn study confirmed that recruitment into
research studies is only a part of the problem, and in fact
many barriers to treatment among African Americans with
OCD were identified. These included the cost of treatment,
stigma/shame, fears of therapy, belief that a clinician would
not be able to help, not perceiving a need for treatment, and
treatment logistical issues [18].
Among lower income participants, problems in the
community mental health system were an obstacle, including
a low priority for treatment anxiety disorders, and a lack of
community mental health providers adequately trained to
provide OCD treatment. There were also issues concerning
the recognition of OCD symptoms among African
Americans, and failing to report symptoms to health care
providers. Cultural issues noted among the sample included
prohibitions against mental health care and a tendency
toward viewing distressing thoughts as a spiritual problem to
be resolved through religious practices. However, the most
common issue reported by participants was that the person
did not realize s/he had a disorder or that there were effective
treatments for OCD [18].
One participant in the Penn study said, "I was just
embarrassed. Getting this type of help has, and continues to
be, like a sore thumb in the African American community.
Unfortunately, I don't have insurance, so my fear was that if
I sought help, it would not be good because I couldn't afford
it." For several participants, the study assessment process
and subsequent discussion of treatment with a clinician
resulted in a change of thinking. Another confessed, "I was
unaware, deluded, or in denial about the level of impact my
condition had on life. Too much tolerance for deficiencies"
[18, 19].
Concerns expressed by the African American sample
were compared to non-Hispanic Whites in a previous study
about barriers to treatment [19]. There were no racial group
differences in worries about the cost of treatment, or feelings
of shame and stigma; however, African Americans were
significantly less likely to know where to go the receive help
and almost a quarter endorsed fears about racism and
discrimination from treatment providers. These issues are
therefore uniquely important to long-term goals concerning
outreach and treatment for African Americans [11].
African Americans with Obsessive-Compulsive Disorder: An Update
Although the Penn study was not a clinical treatment
study, treatment was discussed with each participant. The
vast majority expressed a desire for treatment, and many
attempted to obtain or even started treatment during the
follow-up period. Unfortunately, many others who were
interested were unable to obtain care.
1.4. Symptom Dimensions and Cognitions
It is important for clinicians to accurately understand
symptom differences in African Americans because patients
who do not meet the most common OCD presentations (i.e.,
contamination fears and overt repetitive checking) may not
be quickly identified for intervention. African Americans are
routinely over diagnosed with psychotic disorders and more
likely to be hospitalized, even after controlling for symptom
severity and socioeconomic status [20]. Given the bias
toward a psychotic diagnosis for this group, it is quite
possible that African Americans with the most severe OCD
may be misdiagnosed with psychosis – especially those with
unusual obsessions or compulsions [21, 22]. Effective
treatments for OCD are typically quite different than those
for psychotic disorders [23, 24]. Thus, clinicians must have a
good understanding of OCD symptomology when assessing
and treating patients in this ethnic/racial group.
To explicate these differences, the specific OCD
symptoms reported by participants in the Penn study was
compared to these symptoms reported by African Americans
in the NSAL study [25]. Although the NSAL dataset
provides fewer specific details about OCD symptoms,
researchers were able to make some relevant comparisons to
aid in understanding the disorder in African Americans
nationally.
Six symptom dimensions were identified, which were
similar to those of previous studies in primarily European
and European American samples. These dimensions included
contamination/washing, symmetry/perfectionism, doubts about
harm/checking, sexual obsessions/reassurance, aggression/
mental compulsions, and hoarding [23]. African Americans
with OCD reported increased contamination symptoms
relative to their White counterparts and were twice as likely
to report excessive concerns about animals, which was
consistent with studies conducted with non-clinical samples.
African Americans with OCD were more likely to
include not being understood clearly as a primary concern
when compared to White samples. This finding, along with
more commonly endorsed concerns related to contamination,
potentially indicate that specific cultural experiences and
values may influence the presentation of obsessive
compulsive symptoms in African Americans. For example,
experiences with disenfranchisement as a result of ethnic and
racial discrimination may further perpetuate anxiety about
not being heard or understood; while prejudiced assumptions
about the cleanliness of African Americans may further
perpetuate contamination concerns [23].
In terms of cognitions, a study of a student sample
indicated a weaker relationship between OCD-related beliefs
and OCD symptoms in African Americans compared to
European Americans [26]. The investigators also found that
Current Psychiatry Reviews, 2016, Vol. 12, No. 2 111
African American OCD symptoms were more strongly
related to the use of avoidant control strategies in response to
intrusive thoughts than were European Americans' symptoms
– although the difference did not reach statistical
significance. In particular, African Americans' control
strategies were more strongly related to checking symptoms.
No studies have been published on the topic of OCD
cognitions in African Americans diagnosed with OCD, but
one preliminary study of the Penn sample indicated that
African Americans scored significantly higher on all three
scales of the Obsessive-Compulsive Questionnaire-Short
Form [27] OBQ-44 (responsibility and threat estimation,
perfectionism and intolerance for uncertainty, and
importance and control of thoughts) than the primarily White
validation sample [28]. However, it is not clear if the OBQ-
44 functions in the same matter across ethnoracial groups, so
more work is needed to determine the cause of these
differences.
1.5. Comorbidity
Comorbidity is common in OCD, with the vast majority
of suffers meeting criteria for another disorder in addition to
OCD [12]. A preliminary study of the Penn sample revealed
a number of important findings. For lifetime disorders,
87.9% of the Penn sample had at least one other comorbid
condition. Comorbid conditions can complicate treatment
and increase disease burden. The most prevalent comorbidities
were mood disorders (67.1%), anxiety disorders (51.4%),
and substance abuse disorders (38.0%). There was low
comorbidity with eating disorders, as only 4.1% had binge
eating disorder and none met criteria for anorexia or bulimia
nervosa. In terms of gender differences, females were more
likely to have posttraumatic stress disorder, and males were
more likely to have a comorbid alcohol use disorder [29].
Hoarding is no longer considered a subtype of OCD,
having since been designated as its own disorder in the
DSM-5 [30] under the category of OCD and Related
Disorders. To date there are no published studies of hoarding
symptoms in African Americans, with or without an OCD
diagnosis. However, over half of participants had hoarding
compulsions (56.0%) as indicated by the Yale-Brown
Obsessive-Compulsive Scale. [31]. African Americans with
hoarding behaviors tended to earn less money, have lower
levels of educational attainment and be more likely to rely on
a spouse or partner for financial support than those with
OCD but without hoarding symptoms. Hoarders were also
more likely to have comorbid mood and substance abuse
disorders, while non-hoarders were more likely to endorse
anxiety-related psychopathological symptoms. Hoarders were
also more likely to experience slowness, indecisiveness, and
pathological doubting when compared to non-hoarders.
These differences illustrate that hoarding in African Americans
may involve increased disability compared to OCD without
hoarding [31].
1.6. Diagnosing OCD
The lack of diversity in the initial development of most
OCD assessment measures has made screening and diagnosis
112 Current Psychiatry Reviews, 2016, Vol. 12, No. 2
of African Americans more difficult [32]. Research has
shown that many self-report measures, such as the Maudsley
Obsessive Compulsive Inventory (MOCI) and Padua
Inventories, lack validity in non-clinical samples of African
Americans [7, 33-35]. For example, on the MOCI, African
American students scored higher on contamination and
checking scales than European American students [33]. On
the Padua Inventories, African Americans endorsed greater
contamination anxiety and higher total scores [7, 34-36]. On
the Obsessive Compulsive Inventory, Revised (OCI-R),
African Americans scored higher on the washing scale [7,
35]. The OCD subscale of the National Anxiety Disorders
Screening Day instrument – utilized among five ethnic
groups – demonstrated a problematic factor loading for
African Americans [37].
In a study exploring symptom dimensions in several
ethnoracial groups using the Dimensional Scale for
Obsessive Compulsive Scale (DOCS) [38], African American
participants reported more contamination-related symptoms
compared to European Americans, but no differences were
found in other areas (i.e., responsibility for harm, unacceptable
thoughts, and symmetry). However, it is difficult to draw
meaningful conclusions from these type of findings, as
several of these measures had yet to be validated in a sample
that includes African Americans with OCD.
The Penn study enabled an investigation of the
psychometric properties of three different clinical measures
in African Americans diagnosed with OCD: the Obsessive
Compulsive Inventory-Revised (OCI-R) [39], the Yale-
Brown Obsessive Compulsive Scale (Y-BOCS) [40], and the
Structured Clinical Interview for the DSM-IV Axis I (SCID)
[41].
It was found that the SCID was not a reliable method to
determine the presence of OCD in African Americans
(33.8% missed diagnosis rate for African American with
verified OCD) [42], but the Y-BOCS Severity Scale [43],
and the Obsessive Compulsive Inventory-Revised [44]
showed good validity when compared to related measures in
African Americans with OCD. On the OCI-R, African
American college students in a control group reported more
contamination concerns when compared with non-Hispanic
White students, and this cultural difference led to higher
optimal cut-off scores for African Americans in order to
meet diagnostic criteria (36 versus 21).
1.7. Family Factors
Another important research goal is gaining a better
understanding of environmental factors in the development
of OCD symptoms. Many disorders have shown relationships
between childhood family functioning and the occurrence of
symptoms in adults. In a study conducted by Sawyer et
al.,[45] data about childhood family functioning in African
Americans with OCD was compared to a community sample
using a retrospective version of the Family Assessment
Device [46]. The results revealed that communicative and
emotional problems in childhood predicted anxiety and
depression in adulthood, but were not correlated with OCD.
This led researchers to speculate that biological factors may
Williams et al.
be more important in the development of OCD in African
Americans than familial environment, but this has yet to be
studied, as there are currently no biological or developmental
studies of OCD that include adequate numbers of African
Americans to make a determination [45].
CONCLUSION
The last decade has marked tremendous growth in our
understanding of OCD in African Americans, including the
publication of research methodology to enable greater
African American inclusion in future studies [12, 23]. It is
clear that raising awareness within the African American
community about OCD, improving knowledge of effective
treatments, and educating more clinicians so that treatments
are available and accessible in underserved communities are
all crucial to addressing the problems discussed [11]. Critical
future avenues of research include genetic studies, psycho-
pharmacology studies, and psychotherapy treatment outcome
studies for African Americans.
One other vastly neglected area in need of immediate
attention is the development of an understanding of OCD in
African American children. Youth with OCD are at an
increased risk of depression, academic problems, familial
problems, and isolation [47, 48]. Minority children with
OCD are underrepresented or absent from treatment centers
and research studies, although evidence suggests that OCD
may be particularly persistent in these groups [12]. Thus,
there is still much work that needs to be done to provide us
with a comprehensive understanding of OCD in the African
American population.
CONFLICT OF INTEREST
The authors confirm that this article content has no
conflict of interest.
ACKNOWLEDGEMENTS
Declared none.
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