Defining and Addressing Gaps in Care for Obsessive-Compulsive Disorder in the United States
Abstract
Objective:
Obsessive-compulsive disorder (OCD) can be a chronic and disabling illness with a lifetime prevalence of 2%, twice that of schizophrenia. Although effective treatments exist, OCD often remains underdetected and undertreated.
Methods:
The authors performed a scoping review of the literature (of articles in PubMed and PsycINFO published from January 1, 2000, to February 1, 2020) to define gaps in OCD diagnosis and treatment among U.S. adults. Interventions at the patient, clinician, and health care system levels used to address these gaps are described, and promising approaches from around the world are highlighted.
Results:
Of 102 potential studies identified in the search, 27 (including five non-U.S. studies) were included. The studies revealed that lack of clinician and patient knowledge about OCD and misdiagnosis contributes to its underdetection. Suboptimal prescribing of selective serotonin reuptake inhibitor medications and limited use of exposure and response prevention, as a first-line psychotherapy, contribute to OCD undertreatment. Digital health technologies show promise in increasing OCD detection and delivery of evidence-based care and in ensuring continuity of care (including during the COVID-19 pandemic).
Conclusions:
Given the significant rates of disability, morbidity, and mortality associated with OCD, addressing gaps in OCD care will reduce the U.S. burden of mental illness. Further research is needed to determine how the use of digital health technologies can increase the detection and management of OCD.
HIGHLIGHTS
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Studies identified in this review reveal that misdiagnosis and lack of clinician and patient knowledge about obsessive-compulsive disorder (OCD) are key factors that contribute to its underdetection.
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The studies also show that suboptimal prescribing of serotonin reuptake inhibitor medications and limited use of exposure and response prevention therapy contribute to undertreatment of patients with OCD.
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The use of digital health technology—to educate patients and clinicians and to deliver evidence-based treatment—is one of the most promising strategies to date to manage OCD.
Obsessive-compulsive disorder (OCD) can be a chronic and disabling illness. With a lifetime prevalence of approximately 2% (1), the disorder is about twice as common as schizophrenia. 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 increase in risk as for those with schizophrenia. Ruscio et al. (1), with data from the National Comorbidity Survey Replication 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 prospective cohort study (3) of 3 million individuals indicated an increased mortality ratio of 1.88 (95% confidence interval=1.27–2.67) for individuals with OCD who did not have other psychiatric diagnoses. Recently, an international panel of experts (4) reviewed evidence documenting the association between longer OCD duration and increased disability and 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 two first-line treatments for OCD are pharmacotherapy with a serotonin reuptake inhibitor (SRI) and a specialized form of cognitive-behavioral therapy (CBT) called exposure and response prevention (EX/RP). Alone or in combination, these treatments can help up to one-half of OCD patients have minimal symptoms and achieve good functioning (7–10). However, in clinical practice, OCD is often underdetected or misdiagnosed, 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 attributed 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 evidence-based treatment for OCD. Rates of evidence-based psychopharmacology 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 treatment 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 treatment 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 methods outside the United States that can be adapted and tested in this country? To organize our review, we used the taxonomy 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 previously 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 review board of the New York State Psychiatric Institute waived review of this study because the study did not meet the definition of human subjects research. The electronic database search included PubMed and PsycINFO publications (on the EBSCOhost research platform) from 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 conducted in the United States in our level 1 search, because our goal was to document the gap in OCD care in this country. For our level 2 search, we included studies outside the United States if they used an innovative approach, controlled design, or had a larger sample size than a comparable 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 exclusion (e.g., small sample size, studies focused on clinical trials of medications) were documented. Through our search terms and aforementioned backward search process, we identified 102 potentially relevant studies. After excluding 75 studies, 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 lower rates (range 0.084%−0.100%). The discrepancy between the prevalence of OCD in epidemiological surveys and the data from these two large health systems suggest that OCD is not being detected in clinical practice.
Multiple reasons can account for this gap. One reason is lack of knowledge about OCD and its treatment (11, 29). A telephone-based survey to assess public awareness of OCD among adults (N=577) used a case vignette to describe an individual with OCD and found that only about one-third of participants correctly identified OCD (30). Marques and colleagues (31), in an online survey of individuals who met OCD criteria (N=175), found that the most frequently endorsed barriers to care included shame, cost of treatment, doubt that treatment would work, and lack of insurance coverage. These findings indicating a delay in help seeking have been replicated among diverse samples, including African Americans with OCD (32). Other studies (11) have also documented barriers to care that indicate a need for better patient education and engagement and increased access to affordable care.
Another reason for the difference between the prevalence of OCD in epidemiological studies and the rates of diagnosis in clinical practice is that those who do seek treatment may be misdiagnosed. In a series of studies, Glazier and colleagues (33, 34) used vignette-based surveys to assess the diagnostic skills of doctoral-level psychologists and primary care physicians from major medical hospitals. In each study, a vignette of an individual with OCD was presented to the clinicians. Among psychologists (N=360) and primary care physicians (N=208), 40%−50% of case vignettes were not correctly identified as OCD, with certain types of OCD presentations being more likely to remain undetected (e.g., taboo thoughts including sexual, aggressive, and religious obsessions vs. contamination obsessions). Despite the limitations of using case vignettes rather than actual individuals with OCD, the findings suggest that improved clinician education about OCD and the heterogeneity of its clinical presentation is needed.
Underuse of Evidence-Based OCD Treatments
Even when correctly diagnosed, individuals with OCD often do not receive evidence-based treatment. Medicaid data show that approximately one-third of those diagnosed as having OCD received a “minimally effective” medication trial within the first year after diagnosis (27). “Minimally effective” was defined as having filled two consecutive 30-day prescriptions (suggesting 8 weeks of treatment) for an approved medication at a “minimum effective dose” according to APA 2007 practice guidelines (5). Blanco and colleagues (35) reported similar findings from a survey of APA Practice Research Network psychiatrists. Of the OCD patients (N=123) for whom data were available, only about 40% were receiving an SRI at a dosage high enough to be effective for OCD or were having their dosage titrated. Additionally, some patients in the Blanco et al. study were prescribed monotherapy with benzodiazepines (12%) or antipsychotic medications (7%), neither of which has proven effective as a stand-alone treatment for OCD. Marques and colleagues (31) found that among 175 individuals with clinically symptomatic OCD, 60% had been prescribed a selective serotonin reuptake inhibitor (SSRI). Finally, in the vignette study described above, which included primary care clinicians (34), even when the clinicians correctly diagnosed OCD, they reported prescribing SRIs only 35% of the time, a finding that may indicate the need for educating physicians about the type of medications used to treat patients with OCD, dosage recommendations, and treatment duration before expected benefit.
Empirically supported psychotherapy for OCD is also underused in routine clinical care. In the aforementioned online survey (31), about one-half of the respondents reported receiving CBT. However, the term “CBT” encompasses therapies that may include more cognitive methods or more behavioral methods. Thus, it is unclear how many people received EX/RP rather than other forms of CBT. Additionally, 67% of this sample reported receiving talk therapy, and 9% reported receiving eye movement desensitization and reprocessing, neither of which are evidence-based OCD treatments. Moreover, in the survey of APA Practice Research Network psychiatrists (35), <10% of patients with OCD (N=123) had received CBT from a psychiatrist, and approximately 15% had received unspecified psychotherapy from another mental health clinician.
The most detailed study on EX/RP underuse in the United States comes from the Brown Longitudinal Obsessive-Compulsive Study (BLOCS) (36), an observational study of treatment-seeking individuals with OCD (N=293) recruited from mental health specialty sites in Rhode Island and southern Massachusetts. At intake, approximately one-quarter had received a recommended CBT dose, defined as at least 13 sessions scheduled at least weekly. Of the participants (N=202) who completed 2 years of naturalistic follow-up, although 59% had been recommended CBT by a clinician, only 44% had received it, and only 13% had received the recommended dose (37). Reasons for not initiating or not completing CBT included limited availability, expense, and time commitment. Of the participants who received CBT, only some undertook in-session (imaginal or in vivo) exposures with their clinician, despite this technique being an essential EX/RP component (7).
Considered together, these studies reveal that only a small percentage of OCD patients, including treatment-seeking patients at specialized clinics, receive an evidence-based course of CBT with EX/RP; this is a clear target for improvement. This target is important, because patients with OCD have been shown to have strong treatment preferences. For example, adults with OCD often prefer CBT with or without medication to medication alone (38). Thus, if CBT is not available, patients may be offered SRIs alone but may decline them. This possibility warrants further investigation.
Most of the aforementioned studies were conducted before the publication of the DSM-5 and the update of the APA’s practice guidelines for OCD (6), both of which took place in 2013. Despite these publications, a recent retrospective study of 51 community clinicians in Wyoming who treat patients with anxiety disorders, including OCD, found that only 27% of clinicians reported using exposure 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 framework 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 families, 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 families and to motivate help seeking. One example is the Treatment and Intervention in Psychosis (TIPS I) project developed in Norway. This early intervention program reduced 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 information campaign about the signs and symptoms of psychosis (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 presence 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 without the information campaigns, there was a clear regressive change in help-seeking behavior and an increase in the duration of untreated psychosis and baseline symptoms.
In the United States, multiple not-for-profit organizations disseminate information about OCD to the public. For example, the International OCD Foundation (IOCDF) has a website (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 provide 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 such depiction may be positive (e.g., helping someone recognize their illness), the media may also reinforce harmful stereotypes of mental illness and contribute negatively to mental 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 disorders, instead of leaving OCD in the chapter on anxiety disorders 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 insight 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 excessive. This change was made to ensure that such patients’ condition would not be misdiagnosed as a psychotic disorder. 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 provides 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 increasing 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 familiarity 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 settings (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 tested. For example, the Obsessive-Compulsive Inventory–Revised (OCI-R) and the Dimensional Obsessive-Compulsive Scale have been identified as good self-report screening measures because of their length (shorter than other available measures) and psychometric properties (52–54). The International Consortium for Health Outcomes Measurement (55) recommended that the OCI-R be used by clinicians worldwide to assess for OCD among individuals with depression and anxiety. Moreover, a research team in Sweden created the Brief Obsessive-Compulsive Scale (BOCS, adapted from the gold standard OCD measure, the Yale-Brown Obsessive-Compulsive Scale [Y-BOCS]), and found that it had good sensitivity (85%) and specificity (62%−70%) among individuals with OCD and other disorders (56). The effectiveness of these measures as screening tools both in primary and community mental health care warrants investigation.
Increasing the Use of Evidence-Based OCD Treatments
Increased OCD detection can lead to improved outcomes only if identified patients are given effective treatment. Below, we review how educating clinicians and modifying the delivery of evidence-based treatment for OCD in health care systems may increase the use of evidence-based OCD treatments.
Clinician education.
SRIs are first-line OCD medications and consist of clomipramine and the SSRIs. According to the 2013 APA practice guidelines (6), patients may take up to 12 weeks to respond to medications, and sometimes doses exceeding the recommended maximum dose may be beneficial. However, many patients with OCD do not receive SRIs or receive them at suboptimal doses, despite the practice guidelines. Efforts to train prescribers in the correct use of OCD medications should go beyond the development of practice guidelines, as discussed below.
CBT consisting of EX/RP, the first-line psychotherapy for OCD, is also underused in clinical practice, despite a preference of treatment-seeking patients for EX/RP (38). Multiple efforts to increase EX/RP access have included clinician training. The current guidelines from the Accreditation Council for Graduate Medical Education (57) state that psychiatry residents must demonstrate competence in “managing and treating patients using cognitive-behavioral psychotherapies.” They do not, however, specify training in EX/RP specifically. CBT is generally required in psychology graduate programs but is elective in social work programs. A 2007 study (58) found that only 21% of 62 surveyed social work programs offered both didactic training and clinical supervision in CBT, and that study did not address EX/RP specifically. Including CBT with EX/RP for OCD as part of a required set of competencies across these training programs would be one way to ensure clinicians are educated in CBT use.
If clinicians wish to learn about EX/RP on their own, many manuals are available, including those by Foa et al. (59), Steketee (60), and Franklin and colleagues (61) (for treatment of children and adolescents). Self-help workbooks intended for patients, such as Abramowitz’s (62) are also available. Although such manuals help disseminate evidence-based treatment, there is little data on how clinicians use these manuals in their practice or on the outcomes achieved. Clinicians may also seek out training through in-person programs, such as the IOCDF’s Behavioral Therapy Training Institute (BTTI). In an evaluation of this program, clinicians (N=161) reported more than moderate use of BTTI skills, with telephone and peer consultations associated with greater skill use. However, for clinicians who worked in community-based clinics or private practice, difficulty integrating techniques into practice or taking the time for training were common barriers to skill use (63). Therefore, the question of how to train clinicians in EX/RP in a resource-efficient manner is critical. One way forward might be to use technology to train clinicians in CBT that includes EX/RP (64) or to extend the reach of already trained expert clinicians, as discussed below.
Group and team-based approaches in health care systems.
One way to extend the reach of clinicians who are already trained in EX/RP is to change how this therapy is delivered. Anderson and Rees (65) conducted a randomized controlled trial (RCT) of individuals with OCD (N=51) who were assigned to either individual or group CBT or to a waitlist control condition. No significant difference in OCD symptom severity was found between the participants receiving group and individual CBT treatments, and at the 1-month follow-up, participants in both treatment groups significantly improved compared with those assigned to the control condition. Researchers in Norway have developed the Bergen 4-day treatment (B4DT) (66), in which a highly concentrated treatment is delivered over 4 consecutive days. Described as “individual treatment in a group setting,” the treatment is delivered in a group of 3–6 patients with the same number of clinicians. In the first RCT evaluating the effects of the B4DT, 48 patients diagnosed as having OCD were randomly assigned to B4DT, self-help, or a waitlist, with 16 patients in each condition (24). The B4DT yielded significantly better effects than did the control conditions on measures of OCD, as measured by using a modification of the international consensus criteria (67) for response to treatment (≥35% reduction of the individual patient’s pretreatment Y-BOCS score). Although limited by being a small RCT in which B4DT was not compared with an active control condition, this trial’s findings provide preliminary support for delivering EX/RP in a group setting.
Another strategy is to implement a team-based approach, where an expert clinician’s skills are extended through the use of paraprofessionals. For example, Rogers Behavioral Health System has been successfully using bachelor’s level behavioral specialists to provide CBT for patients with OCD. The specialists complete comprehensive training, including didactic materials, readings, and job shadowing, and have ongoing supervision with licensed psychologists. Outcomes for adult and adolescent patients suggest that this model can very effectively reduce OCD severity (68). Mancebo and colleagues (69) pilot tested a similar approach in a community mental health clinic, in which behavioral therapy treatment was delivered by teams including one master’s-level clinician and three bachelor’s-level case managers, with oversight by a senior Ph.D.-level psychologist. In this very small sample (eight participants entered the group EX/RP, and six completed the study), completers had clinically significant decreases in OCD symptoms. Together, these results indicate that using paraprofessionals is one way to extend the reach of EX/RP-trained providers.
Increasing the Use of Digital Health Technology to Improve OCD Detection, Diagnosis, and Treatment
Digital health technologies are being used to educate the public about OCD, to train clinicians in how to diagnose and manage OCD, and to enable health care systems to provide evidence-based treatment. In the following, we review these promising strategies and interventions.
Patient education.
The Internet is being used increasingly to provide health-related information. As mentioned above, the number of websites, such as those of the IOCDF, the ADAA, and the NIMH, that offer online OCD screening tools, educational resources, and search engines for finding a clinician (70, 71) have increased. The goal of these efforts is to raise awareness about OCD and to encourage individuals to seek help.
Clinician education.
Clinician training is another key to successful dissemination and implementation of evidence-based practices (72). As mentioned above, the APA has produced practice guidelines for OCD, and the IOCDF hosts the BTTI to teach clinicians how to conduct EX/RP. However, to date no other published reports are available of structured efforts to train U.S. community clinicians in how to diagnose and manage OCD.
We have undertaken one such effort in New York State. The Improving Providers’ Assessment, Care Delivery and Treatment of OCD (IMPACT-OCD) initiative is supported by the New York State Office of Mental Health (NYS-OMH), in partnership with the Center for Obsessive-Compulsive and Related Disorders, the Center for Practice Innovations at Columbia Psychiatry, and the New York State Psychiatric Institute. The goals of this initiative are to develop education resources for individuals with OCD and their families, to address clinician knowledge gaps in how to diagnose and treat OCD through scalable online training (e.g., e-learning modules on pharmacological OCD management), and to support NYS-OMH community clinicians by providing expert feedback on assessment and treatment of patients with OCD. Made possible by the statewide learning management system and methods for providing virtual implementation support that the NYS-OMH established with the Center for Practice Innovations in 2018, this initiative demonstrates how digital health technology can be used to increase clinical workforce competency. This initiative will also evaluate the impact of online training and examine what types of support clinicians need to provide evidence-based treatment for patients with OCD.
Use of digital health technology to increase treatment access in health care systems.
Digital health technology can also be used to increase access to evidence-based OCD treatment. For example, since the arrival of the COVID-19 pandemic, videoconferencing- or telephone-based treatments have become the de facto standard of care worldwide for both pharmacological and EX/RP treatments of patients with OCD (73). Primary care clinicians who diagnose OCD are already trained to start treatment with SRIs (given that SRIs are commonly used in primary care). Digital health technology, such as online consultation services, can help primary care clinicians access additional expertise when SRIs are insufficient for treatment. For example, the RubiconMD website (https://www.rubiconmd.com) allows primary medical clinicians to obtain online consultations from specialists (including psychiatrists). This service may increase access to psychiatric expertise for patients who may live far from expert psychiatric care or who are willing to see a primary care provider but not a psychiatrist.
The use of digital health technology to increase EX/RP access is even more developed (74). A recent meta-analysis (75) of remote treatment of patients with OCD, including videoconferencing, telephone, and Internet and mobile applications, found large within-group effect sizes for when all remote treatments were pooled together (Hedges’ g=1.17), comparable to that of clinic-based CBT (including EX/RP) for OCD, where effect sizes of approximately 1.1 (Cohen’s d) are generally observed (76, 77).
Although videoconferencing does not necessarily decrease the time required per individual, it expands specialists’ reach to locations where patients would normally not have access to them. For example, Storch et al. (78) conducted an RCT of family-based CBT (including EX/RP) delivered via videoconferencing technology versus a waitlist control condition. The results revealed that 81% of individuals in the active treatment arm responded to the treatment versus only 13% of patients in the waitlist control arm. More recently, Comer and colleagues (79) compared family-based CBT (including EX/RP) delivered via videoconferencing with clinic-based CBT (including EX/RP) in an RCT of children with OCD and their families (N=22). Between 60% and 80% of the children responded to the treatment, with no difference in response status between the groups and no difference in acceptability to parents or perceived alliance with the provider between the groups.
EX/RP delivery via the Internet is another promising strategy for increasing access to this treatment; it has the added advantage over videoconferencing of potentially dramatically decreasing the amount of time clinicians spend with each patient. One of the most evidence-based approaches to date is OCD-NET, a clinician-supported Internet-based CBT developed at the Karolinska Institute in Sweden. OCD-NET is an integrated online platform that includes worksheets, self-assessments, 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 (N=101) were randomly assigned to the OCD-NET or to a control condition (Internet-based supportive therapy). Those assigned to OCD-NET had significantly 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 (N=50) had statistically significant improvement, defined as a posttreatment Y-BOCS score 2 SDs below the mean pretreatment value (80), compared with 6% of the control group (N=51). A subsequent study indicated cost-effectiveness 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 posttreatment). Of the 40 study entrants, 16 (40%) met response criteria 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 telephone 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 8-week pilot trial of 33 adults using the nOCD app in combination with clinician guidance. Our findings suggest that this integrated treatment may be both acceptable and efficacious (85). Twenty-seven participants (82%) completed the program, and most participants were very (68%) satisfied. The 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 8 weeks (within-subjects effect size [Cohen’s d] of 1.94 posttreatment). 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 reviewed here reveal that lack of clinician and patient knowledge 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 undertreatment. 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 management 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 specificity 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 clinicians in implementing evidence-based OCD care.
Digital health technologies provide innovative solutions to detect and address gaps in OCD diagnosis and care on a large scale. As Mohr and colleagues (89) have explained, however, “the relatively consistent finding has been that substantive mental health benefits are more consistently achieved in the context of human support.” Indeed, the most evidence-based digital health technologies for OCD, including OCD-NET and videoconferencing, are clinician-supported services. Because of the COVID-19 pandemic, digital health technology has become the de facto standard of care. Although studied in Sweden (90) and the United Kingdom (91, 92), further research is needed in the United States, because the U.S. health care system differs from those of these other countries. How any of the approaches described above might be implemented in the United States will depend on both their efficacies and their costs. Ideally, a cost evaluation should take into account both the direct costs of increased detection and treatment and the indirect cost savings to society if these new strategies reduce the burden of illness for individuals with OCD.
Given the significant risk for increased disability, morbidity, and mortality rates associated with OCD, addressing gaps in OCD care will reduce the burden of mental illness in the United States. Moreover, mounting evidence that delayed OCD treatment can worsen clinical outcomes and is associated with negative effects on the brain (93) underscores the importance of early detection and treatment (4). Successful early intervention programs, such as OnTrackNY, a coordinated specialty care program for first-episode psychosis in New York State, have led to improved symptoms and functioning of individuals with psychosis, as well as fewer hospitalizations for enrolled patients (94). Whether such models can be successfully adapted for individuals with OCD deserves further study. An important first step is to increase OCD detection and management in the community, which digital health technologies show great promise in being able to do.
Footnotes
Drs. Senter and Patel contributed equally to this study.
Dr. Simpson receives research funds from Biohaven Pharmaceuticals, royalties from Cambridge University Press and UpToDate, and a stipend from the American Medical Association for her role as associate editor of JAMA Psychiatry. The other authors report no financial relationships with commercial interests.
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Received: 29 April 2020
Revision received: 14 October 2020
Accepted: 16 October 2020
Published online: 7 May 2021
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