SENTER ET AL.

REVIEWS AND OVERVIEWS

Defining and Addressing Gaps in Care for Obsessive-

Compulsive Disorder in the United States
Meredith S. Senter, M.D., Sapana R. Patel, Ph.D., Lisa B. Dixon, M.D., M.P.H., Robert W. Myers, Ph.D.,
H. Blair Simpson, M.D., Ph.D.

Objective: Obsessive-compulsive disorder (OCD) can be a OCD and misdiagnosis contributes to its underdetection.
chronic and disabling illness with a lifetime prevalence of 2%, Suboptimal prescribing of selective serotonin reuptake in-
twice that of schizophrenia. Although effective treatments hibitor medications and limited use of exposure and re-
exist, OCD often remains underdetected and undertreated. sponse prevention, as a first-line psychotherapy, contribute to
OCD undertreatment. Digital health technologies show
Methods: The authors performed a scoping review of the promise in increasing OCD detection and delivery of evi-
literature (of articles in PubMed and PsycINFO published from dence-based care and in ensuring continuity of care (in- cluding
January 1, 2000, to February 1, 2020) to define gaps in during the COVID-19 pandemic).
OCD diagnosis and treatment among U.S. adults.
Interventions at the patient, clinician, and health care system levels Conclusions: Given the significant rates of disability,
used to address these gaps are described, and prom- ising morbidity, and mortality associated with OCD, addressing gaps
approaches from around the world are highlighted. in OCD care will reduce the U.S. burden of mental
illness. Further research is needed to determine how the use of
Results: Of 102 potential studies identified in the search, 27 digital health technologies can increase the detec- tion and
(including five non-U.S. studies) were included. The studies management of OCD.
revealed that lack of clinician and patient knowledge about
Psychiatric Services 2021; 72:784–793; doi: 10.1176/appi.ps.202000296

Obsessive-compulsive disorder (OCD) can be a chronic and association between longer OCD duration and increased
disabling illness. With a lifetime prevalence of approximately disability and
2% (1), the disorder is about twice as common as schizo-
phrenia. Data from the United States and around the world
show that OCD carries significant risk for increased rates of
disability, morbidity, and mortality. For example, Kouzis and
Eaton (2), with data from the Epidemiologic Catchment
Area survey, found that individuals with OCD had higher
odds of receiving disability payments (adjusted relative risk
of 2.7) than had those without OCD; this was the same in-
crease in risk as for those with schizophrenia. Ruscio et al.
(1), with data from the National Comorbidity Survey
Replica- tion study, found that past-year OCD was
associated with an average of 45.7 days out of a work role
or unable to work for psychiatric reasons. Moreover, results
from a Danish prospec- tive cohort study (3) of 3 million
individuals indicated an increased mortality ratio of 1.88
(95% confidence inter-
val51.27–2.67) for individuals with OCD who did not have
other psychiatric diagnoses. Recently, an international panel
of experts (4) reviewed evidence documenting the

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poor clinical outcomes, issuing a consensus statement
calling for early intervention efforts. Clearly, the burden
of OCD is heavy and is felt by both individuals and society.
Fortunately, OCD is treatable. According to American
Psychiatric Association (APA) practice guidelines (5, 6),
the

HIGHLIGHTS
Studies identified in this review reveal that misdiagnosis
and lack of clinician and patient knowledge about obsessive-compulsive disord

The studies also show that suboptimal prescribing of

serotonin reuptake inhibitor medications and limited use of exposure and resp

The use of digital health technology—to educate

patients and clinicians and to deliver evidence-based treatment—is one of the

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 SENTER ET AL.

two first-line treatments for OCD are pharmacotherapy with review board of the New York State Psychiatric Institute
a serotonin reuptake inhibitor (SRI) and a specialized form waived review of this study because the study did not meet
of cognitive-behavioral therapy (CBT) called exposure and
re- sponse prevention (EX/RP). Alone or in combination,
these treatments can help up to one-half of OCD patients
have mini- mal symptoms and achieve good functioning (7–
10). However, in clinical practice, OCD is often
underdetected or misdiag-
nosed, and even when properly assessed, evidence-based
treatment is often not accessible (11).
This gap in the diagnosis and treatment of OCD has been
long recognized. The gap in diagnosis may, in part, be attrib-
uted to a delay in help seeking. Studies in the United States
have reported that individuals with OCD have symptoms
for on average 17 years before receiving treatment (11–13).
It has
been estimated that between 38% and 89% of individuals
with OCD neither ask for nor receive treatment (14–16).
Other reasons for the diagnosis gap include underdetection
and misdiagnosis and are reviewed herein.
In 2004, the World Health Organization (17) reported a
57% treatment gap in OCD worldwide, citing the difference
between the prevalence of OCD reported in epidemiological
studies and the rates of service utilization for OCD. In the
United States, the OCD treatment gap is 55%, greater than
that for schizophrenia and nonaffective psychoses (36%) or
bipolar disorder (39%). In 2013, in a review of treatments
for patients with OCD receive around the world, Schwartz
and colleagues (18) found that ,30% received CBT that
included exposure techniques, which are an essential
component of evi- dence-based treatment for OCD. Rates of
evidence-based psy- chopharmacology are also alarmingly
low, as described below.
Because OCD is both common and treatable, addressing
the gap in OCD care can have a major impact on public
mental health. The objective of this scoping literature review
(19) was to define current gaps in the diagnosis and treat-
ment of adults with OCD and to identify potential solutions.
We sought to address the following questions: What factors
contribute to the gap in the detection, diagnosis, and treat-
ment of OCD in the United States? What patient-, clinician-,
and health system–level strategies or interventions are
being used to address these gaps, and are there promising
meth- ods outside the United States that can be adapted
and tested
in this country? To organize our review, we used the taxono-
my of strategies and interventions developed by the Agency
for Healthcare Research and Quality (AHRQ) to reduce gaps
in medical care (20); although commonly used for medical
conditions, to our knowledge, this framework has not
previ- ously been applied to mental health conditions. We
close by proposing directions for future research.

METHODS
We used a scoping review method (21) to describe the gap
in the diagnosis and management of OCD. The institutional

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the definition of human subjects research. The electronic OCD is not being detected in clinical practice.
da- tabase search included PubMed and PsycINFO Multiple reasons can account for this gap. One reason is
publications (on the EBSCOhost research platform) from lack of knowledge about OCD and its treatment (11, 29). A
January 1, 2000, to February 1, 2020). To search article
titles, abstracts, and keywords, we used Boolean search
strings with the invariable term “obsessive-compulsive
disorder” connected by “AND” to one of the following
terms: diagnosis gap,
underdetection, treatment gap, digital health technology,
telehealth, treatment seeking, health care utilization, and
treatment barriers. We also searched for relevant articles
in the references of the included publications (i.e.,
backward search). Moreover, we limited our search to
studies of adults (ages $18 years) to reduce data
heterogeneity. For the same reason, we excluded OCD-
related disorders and when OCD was mentioned only as a
comorbid condition.
Searches focused on two levels: studies documenting
gaps in OCD diagnosis and treatment (level 1) and studies
on strategies or interventions to improve OCD detection
and treatment (level 2). We limited our search to those con-
ducted in the United States in our level 1 search, because
our goal was to document the gap in OCD care in this
coun- try. For our level 2 search, we included studies
outside the United States if they used an innovative
approach, con- trolled design, or had a larger sample size
than a compara- ble study in the United States. After one
author (M.S.) screened all titles and abstracts by using the
inclusion criteria, two authors (M.S. and S.P.)
independently screened the full texts. Any discrepancies
among the authors about including or excluding a
publication were resolved, and reasons for ex- clusion
(e.g., small sample size, studies focused on clinical tri- als
of medications) were documented. Through our search
terms and aforementioned backward search process, we
iden- tified 102 potentially relevant studies. After excluding
75 stud- ies, 27 were included in the present review. Of
these 27 studies, 13 focused on gaps in OCD care, and 14
focused on strategies or interventions to improve OCD
care (including
five non-U.S. studies [22–26]).

DEFINING THE GAP

OCD Underdetection and Misdiagnosis
Results from epidemiological studies and large health
care systems document underdetection of OCD in the
United States. Using data from the National Comorbidity
Survey Replication, Ruscio et al. (1) found that 2.3% of
adults met DSM-IV criteria for lifetime OCD, and 1.2% met
criteria for OCD within the previous 12 months. Studies of
data from two large health systems, Kaiser Permanente
(27) and the
state of Florida’s Medicaid system (28), however, found
low- er rates (range 0.084%20.100%). The discrepancy
between
the prevalence of OCD in epidemiological surveys and the
data from these two large health systems suggest that

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 DEFINING AND ADDRESSING GAPS IN CARE FOR

telephone-based survey to assess public awareness of OCD vignette study described above, which included primary care
among adults (N5577) used a case vignette to describe an clinicians (34), even when the clinicians correctly
individual with OCD and found that only about one-third of diagnosed OCD, they reported prescribing SRIs only 35% of
participants correctly identified OCD (30). Marques and the time, a finding that may indicate the need for educating
col- leagues (31), in an online survey of individuals who physicians about the type of medications used to treat
met OCD criteria (N5175), found that the most patients with OCD, dosage recommendations, and
frequently en- dorsed barriers to care included shame, cost treatment duration before expected benefit.
of treatment, doubt that treatment would work, and lack of
Empirically supported psychotherapy for OCD is also
insurance coverage. These findings indicating a delay in underused in routine clinical care. In the aforementioned
help seeking have been replicated among diverse samples, online survey (31), about one-half of the respondents
including Afri- can Americans with OCD (32). Other studies
reported receiving CBT. However, the term “CBT” encom-
(11) have also documented barriers to care that indicate a
passes therapies that may include more cognitive methods
need for better patient education and engagement and
or more behavioral methods. Thus, it is unclear how many
increased access to affordable care.
people received EX/RP rather than other forms of CBT.
Another reason for the difference between the preva-
Additionally, 67% of this sample reported receiving talk
lence of OCD in epidemiological studies and the rates of
therapy, and 9% reported receiving eye movement
diagnosis in clinical practice is that those who do seek
desensiti- zation and reprocessing, neither of which are
treat- ment may be misdiagnosed. In a series of studies,
evidence- based OCD treatments. Moreover, in the survey
Glazier and colleagues (33, 34) used vignette-based surveys
of APA Practice Research Network psychiatrists (35),
to assess the diagnostic skills of doctoral-level
,10% of patients with OCD (N5123) had received CBT
psychologists and pri- mary care physicians from major
from a psy- chiatrist, and approximately 15% had received
medical hospitals. In each study, a vignette of an individual
unspecified psychotherapy from another mental health
with OCD was presented to the clinicians. Among
clinician.
psychologists (N5360) and primary care physicians
The most detailed study on EX/RP underuse in the Unit-
(N5208), 40%250% of case vignettes were not correctly
ed States comes from the Brown Longitudinal Obsessive-
identified as OCD, with certain types of OCD presentations
Compulsive Study (BLOCS) (36), an observational study of
being more likely to remain undetected (e.g., taboo
treatment-seeking individuals with OCD (N5293) recruited
thoughts including sexual, aggressive, and religious
from mental health specialty sites in Rhode Island and
obsessions vs. contamination obsessions). Despite the limita-
southern Massachusetts. At intake, approximately one-quar-
tions of using case vignettes rather than actual individuals
ter had received a recommended CBT dose, defined as at
with OCD, the findings suggest that improved clinician
least 13 sessions scheduled at least weekly. Of the partici-
education about OCD and the heterogeneity of its clinical
pants (N5202) who completed 2 years of naturalistic
presentation is needed.
follow-up, although 59% had been recommended CBT by a
clinician, only 44% had received it, and only 13% had
Underuse of Evidence-Based OCD Treatments received the recommended dose (37). Reasons for not initi-
Even when correctly diagnosed, individuals with OCD often ating or not completing CBT included limited availability,
do not receive evidence-based treatment. Medicaid data
expense, and time commitment. Of the participants who
show that approximately one-third of those diagnosed as
received CBT, only some undertook in-session (imaginal or
having OCD received a “minimally effective” medication tri- in vivo) exposures with their clinician, despite this
al within the first year after diagnosis (27). “Minimally technique being an essential EX/RP component (7).
effective” was defined as having filled two consecutive 30- Considered together, these studies reveal that only a
day prescriptions (suggesting 8 weeks of treatment) for an small percentage of OCD patients, including treatment-seek-
approved medication at a “minimum effective dose” accord- ing patients at specialized clinics, receive an evidence-based
ing to APA 2007 practice guidelines (5). Blanco and col- course of CBT with EX/RP; this is a clear target for im-
leagues (35) reported similar findings from a survey of APA provement. This target is important, because patients with
Practice Research Network psychiatrists. Of the OCD pa- OCD have been shown to have strong treatment preferen-
tients (N5123) for whom data were available, only ces. For example, adults with OCD often prefer CBT with or
about 40% were receiving an SRI at a dosage high enough without medication to medication alone (38). Thus, if CBT
to be effective for OCD or were having their dosage titrated. is not available, patients may be offered SRIs alone but may
Additionally, some patients in the Blanco et al. study were decline them. This possibility warrants further investigation.
prescribed monotherapy with benzodiazepines (12%) or an- Most of the aforementioned studies were conducted
tipsychotic medications (7%), neither of which has proven before the publication of the DSM-5 and the update of
effective as a stand-alone treatment for OCD. Marques and
the APA’s practice guidelines for OCD (6), both of which
colleagues (31) found that among 175 individuals with clini- took place in 2013. Despite these publications, a recent ret-
cally symptomatic OCD, 60% had been prescribed a rospective study of 51 community clinicians in Wyoming
selective serotonin reuptake inhibitor (SSRI). Finally, in the who treat patients with anxiety disorders, including OCD,

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found that only 27% of clinicians reported using exposure such depiction
techniques (39), suggesting a need to train clinicians in
OCD treatment, as described below.

ADDRESSING THE GAP

A multilevel approach is needed to address the gaps in
OCD diagnosis and treatment. In response to the frame-
work from the AHRQ (20), here we review current
strategies and interventions at the patient, clinician, and
health care system levels and highlight some promising
approaches from other countries that may be adapted and
tested in the United States.

Increasing OCD Detection and Diagnosis

Diverse educational strategies targeting patients and their fam-
ilies, clinicians, and health care systems are reviewed below.

Patient and family education. Public awareness campaigns

can be used to educate individuals with OCD and their fam-
ilies and to motivate help seeking. One example is the
Treat- ment and Intervention in Psychosis (TIPS I) project
developed in Norway. This early intervention program re-
duced the duration of untreated psychosis in first-episode
schizophrenia from 16 to 5 weeks. The TIPS I project used
a combination of easily accessed detection teams and an in-
formation campaign about the signs and symptoms of psy-
chosis (40). In a follow-up study (22), a historical control
design was used to compare two cohorts of patients with
first-episode nonaffective psychosis recruited in the pres-
ence or absence of the information campaign (a detection
team was available to both cohorts). The authors found that
during the period without the information campaign, the
duration of untreated psychosis returned to a median of 15
weeks, and fewer patients came to clinical attention
through the detection teams (22). The authors concluded
that with- out the information campaigns, there was a clear
regressive change in help-seeking behavior and an increase
in the du- ration of untreated psychosis and baseline
symptoms.
In the United States, multiple not-for-profit
organizations disseminate information about OCD to the
public. For exam- ple, the International OCD Foundation
(IOCDF) has a web- site (https://iocdf.org) with detailed
information about OCD, and IOCDF hosts OCD Awareness
Week, a week in October when organizations around the
world hold lecture series, OCD-inspired art exhibits, and
fundraisers. The Anxiety and Depression Association of
America (ADAA) (https://adaa. org), the National Alliance
on Mental Illness (https://www. nami.org), and the
National Institute of Mental Health (NIMH;
https://www.nimh.nih.gov/index.shtml) also pro- vide
information about OCD to educate patients, families, and
the public. To date, no published assessments exist of the
impact of these efforts on outcomes for patients.
Individuals may also learn about OCD through
depictions in the media (e.g., TV and movies). Although

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 DEFINING AND ADDRESSING GAPS IN CARE FOR
may be positive (e.g., helping someone recognize their tested. For example, the Obsessive-Compulsive Inventory–
illness), the media may also reinforce harmful stereotypes Revised (OCI-R) and the Dimensional Obsessive-
of mental illness and contribute negatively to mental Compulsive Scale
health literacy (41). Further research is needed to
determine the most effective methods for educating
patients and families about OCD.

Clinician education. Once individuals with OCD present for

care, an accurate diagnosis is key. To increase knowledge
about OCD, a separate chapter was created in the DSM-5
to specifically address obsessive-compulsive and related
disor- ders, instead of leaving OCD in the chapter on
anxiety disor- ders as in the DSM-IV. In addition, the
diagnostic criteria and text were revised to reflect
advances in nosology and to help clinicians make a
diagnosis (42, 43). For example, an in- sight specifier was
added to highlight that some people with OCD may have
delusional beliefs about their symptoms and may be
unable to recognize them as unreasonable or exces-
sive. This change was made to ensure that such patients’
condition would not be misdiagnosed as a psychotic
disor-
der. Moreover, the text emphasizes that compulsions can
be either overtly behavioral or mental, describes the
range of OCD content seen among individuals with OCD,
and pro- vides specific guidelines for differential
diagnosis. Similar
changes have been implemented in the ICD-11 (44–46).
Whether these changes will have the intended effect of
in-
creasing the number of proper OCD diagnoses remains to
be determined.
Primary care providers can play a crucial role in
reducing the OCD burden through early detection and
treatment (47). Considered the gateway providers to
mental health care, such providers likely have less formal
training or famil- iarity with OCD (47, 48). To address this
knowledge gap, Craner and colleagues (48) presented an
example of an individual with OCD to educate primary
care providers. The full scope of underdetection in
primary care has not been systematically studied.

Use of OCD screening measures in health care systems. One

way to increase OCD detection in both primary care and
community mental health settings may be to implement a
brief self-report screening measure, a model that has
been
extensively studied for depression. For example, the
Patient Health Questionnaire–9 (PHQ-9) has a sensitivity
of 88% and specificity of 88% for major depression (49)
and is now widely used to screen for depression in
primary care set-
tings (50). Lewandowski and colleagues (51) have shown
that increased screening rates with the PHQ-9 increase
the rates of diagnosis of depression in a large U.S. health
maintenance organization.
The effectiveness of using a brief measure to screen for
OCD in primary or community mental health care needs
to be studied, and several measures are ready to be

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have been identified as good self-report screening measures

available. Although such manuals help disseminate evi-
because of their length (shorter than other available meas-
dence-based treatment, there is little data on how clinicians
ures) and psychometric properties (52–54). The Internation-
use these manuals in their practice or on the outcomes
al Consortium for Health Outcomes Measurement (55)
achieved. Clinicians may also seek out training through in-
recommended that the OCI-R be used by clinicians world-
person programs, such as the IOCDF’s Behavioral Thera- py
wide to assess for OCD among individuals with depression
Training Institute (BTTI). In an evaluation of this pro- gram,
and anxiety. Moreover, a research team in Sweden created
clinicians (N5161) reported more than moderate use
the Brief Obsessive-Compulsive Scale (BOCS, adapted from
of BTTI skills, with telephone and peer consultations associ-
the gold standard OCD measure, the Yale-Brown Obsessive-
ated with greater skill use. However, for clinicians who
Compulsive Scale [Y-BOCS]), and found that it had good
worked in community-based clinics or private practice,
sensitivity (85%) and specificity (62%270%) among individ-
diffi- culty integrating techniques into practice or taking the
uals with OCD and other disorders (56). The effectiveness
time for training were common barriers to skill use (63).
of these measures as screening tools both in primary and
There- fore, the question of how to train clinicians in EX/RP
community mental health care warrants investigation.
in a resource-efficient manner is critical. One way forward
might be to use technology to train clinicians in CBT that
Increasing the Use of Evidence-Based OCD Treatments includes EX/RP (64) or to extend the reach of already
Increased OCD detection can lead to improved outcomes trained expert clinicians, as discussed below.
only if identified patients are given effective treatment.
Below, we review how educating clinicians and modifying
Group and team-based approaches in health care systems.
the delivery of evidence-based treatment for OCD in
One way to extend the reach of clinicians who are already
health care systems may increase the use of evidence-based
trained in EX/RP is to change how this therapy is delivered.
OCD treatments.
Anderson and Rees (65) conducted a randomized controlled
trial (RCT) of individuals with OCD (N551) who were as-
Clinician education. SRIs are first-line OCD medications signed to either individual or group CBT or to a waitlist
and consist of clomipramine and the SSRIs. According to control condition. No significant difference in OCD symp-
the 2013 APA practice guidelines (6), patients may take up tom severity was found between the participants receiving
to 12 weeks to respond to medications, and sometimes group and individual CBT treatments, and at the 1-month
doses exceeding the recommended maximum dose may be follow-up, participants in both treatment groups
benefi- cial. However, many patients with OCD do not significantly improved compared with those assigned to the
receive SRIs or receive them at suboptimal doses, despite control con- dition. Researchers in Norway have developed
the practice guidelines. Efforts to train prescribers in the the Bergen 4-day treatment (B4DT) (66), in which a highly
correct use of OCD medications should go beyond the concentrat- ed treatment is delivered over 4 consecutive
development of practice guidelines, as discussed below. days. Described
CBT consisting of EX/RP, the first-line psychotherapy for
as “individual treatment in a group setting,” the treatment is
OCD, is also underused in clinical practice, despite a prefer- delivered in a group of 3–6 patients with the same number
ence of treatment-seeking patients for EX/RP (38). Multiple
of clinicians. In the first RCT evaluating the effects of the
efforts to increase EX/RP access have included clinician
B4DT, 48 patients diagnosed as having OCD were randomly
training. The current guidelines from the Accreditation Coun-
assigned to B4DT, self-help, or a waitlist, with 16 patients in
cil for Graduate Medical Education (57) state that
each condition (24). The B4DT yielded significantly better
psychiatry
effects than did the control conditions on measures of OCD,
residents must demonstrate competence in “managing and as measured by using a modification of the international
treating patients using cognitive-behavioral psychotherapies.”
consensus criteria (67) for response to treatment ($35% re-
They do not, however, specify training in EX/RP
specifically. duction of the individual patient’s pretreatment Y-BOCS
CBT is generally required in psychology graduate programs score). Although limited by being a small RCT in which
B4DT was not compared with an active control condition,
but is elective in social work programs. A 2007 study (58)
this trial’s findings provide preliminary support for deliver-
found that only 21% of 62 surveyed social work programs
ing EX/RP in a group setting.
of- fered both didactic training and clinical supervision in
CBT, and that study did not address EX/RP specifically. Another strategy is to implement a team-based approach,
where an expert clinician’s skills are extended through the
Including CBT with EX/RP for OCD as part of a required set
of compe- tencies across these training programs would be use of paraprofessionals. For example, Rogers Behavioral
Health System has been successfully using bachelor’s level
one way to ensure clinicians are educated in CBT use.
If clinicians wish to learn about EX/RP on their own, behavioral specialists to provide CBT for patients with OCD.
many manuals are available, including those by Foa et al. The specialists complete comprehensive training, including
(59), Steketee (60), and Franklin and colleagues (61) (for didactic materials, readings, and job shadowing, and have
treatment of children and adolescents). Self-help workbooks ongoing supervision with licensed psychologists. Outcomes
intended for patients, such as Abramowitz’s (62) are also for adult and adolescent patients suggest that this model

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 DEFINING AND ADDRESSING GAPS IN CARE FOR

can very effectively reduce OCD severity (68). Mancebo and increase clinical workforce competency. This initiative will
colleagues (69) pilot tested a similar approach in a commu- also evaluate the impact of online training and examine
nity mental health clinic, in which behavioral therapy treat- what types of support clinicians need to provide evidence-
ment was delivered by teams including one master’s-level based treatment for patients with OCD.
clinician and three bachelor’s-level case managers, with
oversight by a senior Ph.D.-level psychologist. In this very Use of digital health technology to increase treatment access
small sample (eight participants entered the group EX/RP, in health care systems. Digital health technology can also
and six completed the study), completers had clinically sig- be used to increase access to evidence-based OCD treat-
nificant decreases in OCD symptoms. Together, these results ment. For example, since the arrival of the COVID-19
indicate that using paraprofessionals is one way to extend pandemic, videoconferencing- or telephone-based treat-
the reach of EX/RP-trained providers. ments have become the de facto standard of care world-
wide for both pharmacological and EX/RP treatments of
Increasing the Use of Digital Health Technology to patients with OCD (73). Primary care clinicians who
Improve OCD Detection, Diagnosis, and Treatment diagnose OCD are already trained to start treatment
Digital health technologies are being used to educate the with SRIs (given that SRIs are commonly used in
public about OCD, to train clinicians in how to diagnose and primary care). Digital health technology, such as online
manage OCD, and to enable health care systems to provide consultation services, can help primary care clinicians
evidence-based treatment. In the following, we review these access additional expertise when SRIs are insufficient
promising strategies and interventions. for treatment. For example, the RubiconMD website
(https://www.rubiconmd.com) allows primary medical
Patient education. The Internet is being used increasingly to clinicians to obtain online consultations from specialists
provide health-related information. As mentioned above, the (including psychiatrists). This service may increase ac-
number of websites, such as those of the IOCDF, the ADAA, cess to psychiatric expertise for patients who may live
and the NIMH, that offer online OCD screening tools, educa- far from expert psychiatric care or who are willing to
tional resources, and search engines for finding a clinician see a primary care provider but not a psychiatrist.
(70, 71) have increased. The goal of these efforts is to raise The use of digital health technology to increase EX/RP
aware- ness about OCD and to encourage individuals to seek access is even more developed (74). A recent meta-analysis
help. (75) of remote treatment of patients with OCD, including
videoconferencing, telephone, and Internet and mobile ap-
Clinician education. Clinician training is another key to suc- plications, found large within-group effect sizes for when all
cessful dissemination and implementation of evidence-based remote treatments were pooled together (Hedges’
practices (72). As mentioned above, the APA has produced
g51.17),
practice guidelines for OCD, and the IOCDF hosts the BTTI comparable to that of clinic-based CBT (including EX/RP)
to teach clinicians how to conduct EX/RP. However, to date for OCD, where effect sizes of approximately 1.1 (Cohen’s d)
no other published reports are available of structured are generally observed (76, 77).
efforts to train U.S. community clinicians in how to Although videoconferencing does not necessarily de-
diagnose and manage OCD. crease the time required per individual, it expands special-
We have undertaken one such effort in New York State. ists’ reach to locations where patients would normally not
The Improving Providers’ Assessment, Care Delivery and have access to them. For example, Storch et al. (78) con-
Treatment of OCD (IMPACT-OCD) initiative is supported ducted an RCT of family-based CBT (including EX/RP) de-
by the New York State Office of Mental Health (NYS- livered via videoconferencing technology versus a waitlist
OMH), in partnership with the Center for Obsessive- control condition. The results revealed that 81% of individu-
Compulsive and Related Disorders, the Center for Practice als in the active treatment arm responded to the treatment
Innovations at Columbia Psychiatry, and the New York versus only 13% of patients in the waitlist control arm.
State Psychiatric Institute. The goals of this initiative are to More recently, Comer and colleagues (79) compared family-
develop education resources for individuals with OCD and based CBT (including EX/RP) delivered via
their families, to address clinician knowledge gaps in how videoconferencing with clinic-based CBT (including EX/RP)
to diagnose and treat OCD through scalable online training in an RCT of chil- dren with OCD and their families (N522).
(e.g., e-learning modules on pharmacological OCD manage- Between 60% and 80% of the children responded to the
ment), and to support NYS-OMH community clinicians by treatment, with no difference in response status between
providing expert feedback on assessment and treatment of the groups and no difference in acceptability to parents or
patients with OCD. Made possible by the statewide learning perceived alliance with the provider between the groups.
management system and methods for providing virtual im- EX/RP delivery via the Internet is another promising strat-
plementation support that the NYS-OMH established with egy for increasing access to this treatment; it has the added
the Center for Practice Innovations in 2018, this initiative advantage over videoconferencing of potentially dramatically
demonstrates how digital health technology can be used to decreasing the amount of time clinicians spend with each

790 Psychiatric Services 72:7, July

 SENTER ET

patient. One of the most evidence-based approaches to date is 8-week pilot trial of 33 adults using the nOCD app in combi-
OCD-NET, a clinician-supported Internet-based CBT devel- nation with clinician guidance. Our findings suggest that this
oped at the Karolinska Institute in Sweden. OCD-NET is an integrated treatment may be both acceptable and efficacious
integrated online platform that includes worksheets, self-as-
sessments, and asynchronous e-mail communication with a
clinician. There is no face-to-face contact, but clinicians are
available through the Internet platform (and by phone) to
provide patient support. In the first RCT of this intervention
(25), adults with OCD (N5101) were randomly assigned to
the OCD-NET or to a control condition (Internet-based sup-
portive therapy). Those assigned to OCD-NET had signifi-
cantly greater improvement in OCD symptoms (as
measured by the Y-BOCS), with a within-group effect size
(Cohen’s d) of
1.12 posttreatment. Moreover, 60% of patients in the OCD-
NET group (N550) had statistically significant improvement,
defined as a posttreatment Y-BOCS score 2 SDs below the
mean pretreatment value (80), compared with 6% of the
con- trol group (N551). A subsequent study indicated
cost-effec- tiveness and sustained effects of OCD-NET at the
24-month follow-up (26, 27). A trial in Sweden is now
comparing OCD- NET to clinic-based EX/RP (81).
In adapting the Swedish OCD-NET program for use in
the United States, Patel and colleagues (82) translated the
program into English and adjusted it for cultural context.
They conducted a pilot study of 40 adults with OCD, 28 of
whom completed the 10-week treatment. The study’s
results
indicated statistically significant decreases in OCD severity
(as measured by the Y-BOCS) and depression (as measured
by the Hamilton Depression Rating Scale) and improved
quality of life from baseline to posttreatment at 12 weeks
(within-subjects effect size [Cohen’s d] of 1.38 posttreat-
ment). Of the 40 study entrants, 16 (40%) met response
cri-
teria for OCD (a Y-BOCS decrease of $25% with a Clinical
Global Impressions [CGI] score of 1 or 2). Moreover, seven
individuals attained minimal OCD symptoms (i.e., a Y-BOCS
score of #12). Clinicians spent on average 500 minutes
per patient (including e-mails logged by the platform and
tele- phone calls), compared with .2,500 minutes per
patient (sessions and telephone calls) in clinic-based
EX/RP. OCD- NET was found to be acceptable to patients,
and 50% of the patients continued to use the platform 4
months after the clinician support ended. Internet-based
EX/RP, such as OCD-NET, warrants further study in the
United States.
Mobile applications (apps) have also been developed to
support patients undergoing EX/RP treatment. Some of
these apps are designed for use in collaboration with a
clinician, whereas others are to be used on their own.
Boisseau and colleagues (83) conducted a small open trial of
21 adults using the LiveOCDFree app for self-help EX/RP.
In an intent-to-
treat analysis, scores on the Y-BOCS–Self-Report Scale (84)
were significantly reduced from baseline after 6 weeks of
using the app for 1 hour per day. We recently completed an

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 DEFINING AND ADDRESSING GAPS IN CARE FOR
(85). Twenty-seven participants (82%) completed the clinicians in implementing evidence-based OCD care.
pro- gram, and most participants were very (68%) Digital health technologies provide innovative solutions
satisfied. The results indicated statistically significant to detect and address gaps in OCD diagnosis and care on a
decreases in OCD se- verity (as measured by the Y-BOCS)
and depression (as mea- sured by the Hamilton
Depression Rating Scale) and improved quality of life
from baseline to posttreatment at 8 weeks (within-
subjects effect size [Cohen’s d] of 1.94 post-
treatment). Of the 33 study entrants, 14 (42%) responded
to treatment (indicated by a Y-BOCS score decrease of
$35% and a CGI score of 1 or 2), and eight (24%)
achieved minimal symptoms (Y-BOCS score of #12).
Together, these findings suggest that mobile apps
warrant further investigation as a method for increasing
EX/RP access for patients with OCD.

DISCUSSION AND CONCLUSIONS

There are important gaps in the detection and
management of OCD in the United States. Findings from
the studies re- viewed here reveal that lack of clinician
and patient knowl- edge of OCD and misdiagnosis are key
factors that contribute to OCD underdetection and that
suboptimal SRI prescribing and limited EX/RP use
contribute to its under- treatment. We have used the
AHRQ taxonomy (20, 86) to
identify patient-, clinician-, and health care system–level
strategies and interventions to address these gaps in care.
In
the process, we discovered clear steps for future research,
outlined in the following.
Changes to the DSM and ICD were intended to increase
awareness about OCD and to improve its diagnosis and
management. Whether these efforts have had the
intended effect needs further study. One way to assess
this would be to examine the current rates of OCD
diagnosis and manage- ment in the large U.S. health
systems databases described above (27, 28) or in similar
U.S. samples.
Another strategy for addressing underdetection of OCD
in the United States would be to screen for OCD in
primary care and community mental health systems. The
ideal tool not only should be brief but should also have
sensitivity and spe- cificity for OCD above the common
screening tools already in place (e.g., similar to the
sensitivity and specificity of the PHQ-9). Further
investigation is needed to determine which screening
measures best meet these criteria.
Increasing clinicians’ ability to diagnose and manage
OCD is another key step in addressing the gap in OCD
care.
According to results from studies of the fields of e-
learning, continuing education, and implementation
science (87, 88), the most effective way to train clinicians
is to first evaluate their knowledge and practice and then
to tailor the training to what they need to learn. Our
abovementioned IMPACT- OCD project was designed to
train clinicians, to study the effectiveness of the training,
and to identify strategies (e.g., consultation) to support
792 Psychiatric Services 72:7, July
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large scale. As Mohr and colleagues (89) have explained, 2. Kouzis AC, Eaton WW: Psychopathology and the initiation of
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AUTHOR AND ARTICLE INFORMATION Psychiatry 2003; 44:162–168
New York State Psychiatric Institute and Department of Psychiatry, Va- gelos 15. Goodwin R, Koenen KC, Hellman F, et al: Helpseeking and ac-
College of Physicians and Surgeons, Columbia University, New York City cess to mental health treatment for obsessive-compulsive disor-
(Senter, Patel, Dixon, Simpson); New York State Office of der. Acta Psychiatr Scand 2002; 106:143–149
Mental Health, Albany (Myers). Editor Emeritus Howard H. Goldman, 16. Subramaniam M, Abdin E, Vaingankar JA, et al: Obsessive-
M.D., Ph.D., was decision editor on the manuscript. Send correspon- dence to compulsive disorder: prevalence, correlates, help-seeking and
Dr. Patel ([email protected]). quality of life in a multiracial Asian population. Soc Psychiatry
Psychiatr Epidemiol 2012; 47:2035–2043
Drs. Senter and Patel contributed equally to this study.
17. Kohn R, Saxena S, Levav I, et al: The treatment gap in mental
Dr. Simpson receives research funds from Biohaven Pharmaceuticals, royalties health care. Bull World Health Organ 2004; 82:858–866
from Cambridge University Press and UpToDate, and a stipend from the 18. Schwartz C, Schlegl S, Kuelz AK, et al: Treatment-seeking in
American Medical Association for her role as associate editor of JAMA OCD community cases and psychological treatment actually
Psychiatry. The other authors report no financial relationships provided to treatment-seeking patients: a systematic review.
with commercial interests. J Obsessive Compuls Relat Disord 2013; 2:448–456
Received April 29, 2020; revised October 14, 2020; accepted October 19. Colquhoun HL, Levac D, O’Brien KK, et al: Scoping reviews:
16, 2020; published online May 7, 2021. time for clarity in definition, methods, and reporting. J Clin Epi-
demiol 2014; 67:1291–1294
20. Shojania KG, McDonald KM, Wachter RM, et al (eds): Closing the
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