The development process that led to the publication of DSM-5 provided a timely opportunity to review the literature on obsessive-compulsive and related disorders (OCRDs). This process also enabled research published since the early 1990s (when DSM-IV was developed [American Psychiatric Association 1994]) to inform the revision of diagnostic criteria in order to optimize the diagnosis of each of these disorders and enhance the assessment and treatment of this underdiagnosed and undertreated group of conditions. Each of the preceding chapters has focused on the diagnosis, assessment, and treatment of a specific OCRD (or, in the case of Chapter 7, group of OCRDs). In this concluding chapter, we aim to review the clinical take-home messages that emerge from a consideration of the OCRDs as a whole. We include discussion of assessment and treatment, cross-cultural issues, special populations, gender, consumer advocacy, and personalized medicine.
One key theme that emerges from a consideration of the OCRDs as a whole is a lack of awareness of these disorders and consequent underdiagnosis. Epidemiological data indicate that the OCRDs are highly prevalent and that they are associated not only with individual suffering and disability but also with significant societal costs. Only a few decades ago, these conditions were considered by many to be rare, and even now data indicate that many patients with OCRDs either do not present for treatment or are not appropriately diagnosed if they do. Although this contrast between high burden of disease and low rates of clinical diagnosis is by no means restricted to the OCRDs, it does seem particularly stark in the case of this group of disorders.
Several factors may contribute to the underdiagnosis of OCRDs. First, many of these disorders have only recently gained entry into our psychiatric nomenclature. Although clinical descriptions of body dysmorphic disorder (BDD), hoarding disorder, trichotillomania (hair-pulling disorder), and excoriation (skin-picking) disorder have been available for more than a century, BDD and trichotillomania were first included in DSM in DSM-III-R, published in 1987 (American Psychiatric Association 1987), and hoarding disorder and excoriation (skin-picking) disorder are included for the first time in DSM-5 (American Psychiatric Association 2013). The inclusion of BDD and trichotillomania in DSM-III-R led to increased research on these conditions as well as increased clinician and patient awareness, and we are hopeful that the inclusion of hoarding disorder and excoriation (skin-picking) disorder in DSM-5 will provide a similar impetus for increased research on and recognition of these conditions.
Second, despite some overlap in the phenomenology of these disorders, frequent comorbidity between some of them, and similar assessment methods (e.g., using variations of the Yale-Brown Obsessive Compulsive Scale), those disorders that were included in prior editions of DSM were in different chapters: OCD was classified in the chapter on anxiety disorders, BDD in the chapter on somatoform disorders, and trichotillomania (hair-pulling disorder) in the chapter on impulse-control disorders not elsewhere classified. The lack of a conceptual grouping of these disorders in the nomenclature may have contributed to a failure to train clinicians to think about these conditions in a clear way as well as to a failure by researchers, such as psychiatric epidemiologists, to investigate the prevalence and risk factors associated with this set of conditions.
Third, the nature of the symptoms of these disorders often contributes to delays in care seeking. Many of the intrusive symptoms of OCRDs are associated 275with high levels of shame. (For example, consider the young woman who has intrusive obsessions about harming her baby or the young man who cannot walk into a room without the thought that people are laughing at the shape of his mouth.) Many of the repetitive behaviors of OCRDs are also associated with similar negative feelings; patients who wash their hands to the point of skin peeling, who pull out their hair to the point of baldness, or who have unsightly lesions of skin picking are often embarrassed that they have been unable to exert control over their symptoms. It is key for clinicians to be aware of the high degree of self-stigmatization associated with the OCRDs.
Fourth, there are a range of other barriers to diagnosis. In recent decades, it would seem that levels of mental health literacy have increased in the community as a whole and among some groups of clinicians. Nevertheless, in general, many patients continue to report immense relief when they learn, after years of treatment seeking, that their symptoms are in fact well described in the medical literature, underscoring the fact that knowledge about these disorders is not widely dispersed. In addition, our impression is that many clinicians continue to have relatively little knowledge of current evidence-based treatment approaches to the OCRDs, underscoring the point that better training of clinicians and increased research on these conditions remain important priorities.
There is an urgent need for increased awareness of these disorders among both patients and clinicians. We hope that the new way in which these disorders are grouped together in DSM-5—in the new chapter of OCRDs—will facilitate greater awareness of these prevalent and sometimes disabling conditions and lead to more frequent treatment seeking. Research to improve recognition of these disorders is greatly needed. For example, the OCRDs need to be included in large international epidemiological studies so their prevalence and clinical correlates can be better understood. In addition, clinicians need more training on how to recognize these disorders, which is the first essential step to providing adequate care. Advocacy efforts that have developed since DSM-IV need to be further increased to even more effectively reach and inform patients with an OCRD and family members.
In addition to the high degree of self-stigmatization in the OCRDs, a number of other key assessment and evaluation issues are relevant to this group of disorders.
First, although there are significant differences between each of the OCRDs, there are a number of important uniformities in the structure of symptoms across these disorders, and as a consequence it is possible to develop questions that are useful in screening for a number of different OCRDs, determining whether an OCRD may be present, and assessing symptom severity. 276As noted in Chapter 1 (“Introduction and Major Changes for the Obsessive-Compulsive and Related Disorders in DSM-5”) of this book, in the section on assessment measures, DSM-5 provides a self-rated cross-cutting symptom measure with two questions for OCRDs: 1) “Unpleasant thoughts, urges or images that repeatedly enter your mind?” and 2) “Feeling driven to perform certain behaviors or mental acts over and over again?” These questions performed well in the DSM-5 field trials but require further testing. Patients who score 2 (mild) or higher on these questions should be further assessed for the possible presence of an OCRD.
The DSM-5 subworkgroup on OCRDs also developed brief, self-rated scales for each individual OCRD that are consistent in their structure, reflect DSM-5 criteria, and can be used by clinicians to help generate a dimensional severity rating for the disorders (LeBeau et al. 2013). Questions were drawn from a self-rated symptom severity scale for OCD, the Florida Obsessive-Compulsive Inventory (Storch et al. 2007), and also took into consideration published symptom severity scales for OCRDs. Further work is needed to assess these scales’ reliability and validity in clinical samples.
Second, in many of the OCRDs, it is important to assess level of insight. DSM-5 provides analogous specifiers for insight in the diagnostic criteria for OCD, BDD, and hoarding disorder. In OCD and BDD, good or fair insight is specified when the individual recognizes that his or her disorder-related beliefs are definitely or probably not true or that they may or may not be true. In hoarding disorder, good or fair insight is specified when the individual recognizes that his or her hoarding-related beliefs and behaviors are problematic. In OCD and BDD, poor insight is specified when the individual thinks that his or her disorder-related beliefs are probably true, and absent insight/delusional beliefs is specified when the individual is completely convinced that these beliefs are true. In hoarding disorder, poor insight is specified when the individual is mostly convinced that hoarding-related beliefs and behaviors are not problematic, and absent insight/delusional beliefs is specified when the individual is completely convinced that such symptoms are not problematic despite evidence to the contrary.
The insight specifier has important clinical utility. Patients with OCRDs and absent insight are often misdiagnosed as having a psychotic disorder and consequently may be treated inappropriately with high doses of antipsychotic medications. There is a growing evidence base demonstrating that such patients may respond instead to standard pharmacotherapy interventions for OCRDs (e.g., patients with delusional BDD often respond to treatment with serotonin reuptake inhibitor [SRI] monotherapy) and to standard cognitive-behavioral therapy (CBT) interventions for OCRDs (e.g., OCD patients with no insight may respond to exposure and response prevention interventions) (Leckman et al. 2010; Phillips et al. 2014). Thus, the new insight 277specifier in DSM-5 fixes a problem present in earlier editions of DSM, which encouraged clinicians to diagnose the delusional form of these disorders as a psychotic disorder.
Third, there are a number of key comorbid symptoms and disorders that deserve evaluation in any patient with an OCRD. The OCRDs have high comorbidity with mood and anxiety disorders, and treatment plans need to be configured in order to address such comorbidity. Suicidal thoughts and behaviors are an important consideration in patients with OCRDs, particularly in those with more severe BDD or comorbid depression. In addition, any individual with an OCRD should also be evaluated for the presence of other OCRDs as well as tic disorders, illness anxiety disorder, and obsessive-compulsive personality disorder. Comorbidity with other OCRDs is generally not as frequent as with mood and anxiety disorders (although BDD is an exception; approximately one-third of patients with BDD have comorbid OCD). However, comorbid OCRDs are highly prevalent comorbid disorders, given their relatively lower base rate in the population as a whole (e.g., although comorbid major depressive disorder is more common than comorbid trichotillomania (hair-pulling disorder) in OCD, the latter is much more common in individuals with OCD than in those drawn from the general population) (Lochner and Stein 2010).
Finally, the presence of nonpsychiatric medical disorders and substance use disorders that may be contributing to symptoms should always be considered (e.g., stimulant use in a patient with excoriation [skin-picking] disorder). Although DSM-5 does not yet include the construct pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS), research on this putative condition has emphasized the value of assessing a broad range of potential triggers of OCRDs.
A fourth consideration is the patient’s explanatory model of the OCRD. This is related in part to mental health literacy; those patients who have greater mental health literacy may offer more sophisticated models of the possible pathogenesis of their disorder. At the same time, sophistication does not necessarily mean that the model is correct; for example, some patients may describe well-formulated models of symptoms that rely on outdated psychoanalytic drive theories or self-blame for having the disorder. Explanatory models are also related in part to cultural factors; patients may attribute their symptoms to particular belief systems that have origins in their religious or ethnic backgrounds.
The DSM-5 section on cultural formulation offers a series of useful probes for assessing such models (American Psychiatric Association 2013). Questions include “Why do you think this is happening to you?” and “What do you think are the causes of your [PROBLEM]?” Further possible prompts include “Some people may explain their problem as the result of bad things 278that happen in their life, problems with others, a physical illness, a spiritual reason, or many other causes.” DSM-5’s cultural formulation is an excellent addition to the assessment of any patient, regardless of his or her cultural, ethnic, or religious background.
We believe that it is helpful for clinicians to be aware of a patient’s explanatory model for his or her illness, because this understanding may facilitate a better therapeutic alliance with the patient. If the patient’s model is inaccurate or unhelpful (e.g., when it involves unwarranted self-blame for having symptoms of a disorder), it may be helpful for the clinician to gently challenge that model using a psychoeducational approach. It is usually useful for clinicians to share their own explanatory models of OCD, which may enhance the patient’s willingness to engage in treatment, and then to negotiate a shared approach to the treatment plan. In some cases, understanding the patient’s view of how he or she developed the illness may inform implementation of CBT, although the key recommended elements of CBT, such as exposure and response prevention, should be applied fairly uniformly across patients.
A range of themes emerge from the discussion of pharmacotherapy and psychotherapy for each of the OCRDs.
A first important point is that pharmacotherapy treatment principles for OCD differ in subtle but important ways from those for the management of mood and anxiety disorders. Although a range of antidepressants are useful in many mood and anxiety disorders, in OCD and BDD there appears to be a more selective response to serotonergic antidepressants—that is, clomipramine and the selective serotonin reuptake inhibitors (SSRIs). Patients with OCD and BDD are typically able to tolerate standard starting dosing of medication (e.g., escitalopram 10 mg daily), unlike those with panic disorder (who often require very low initial doses of medication). However, patients with OCD, BDD, and illness anxiety disorder often require much higher doses, administered for longer durations, than those patients with major depression (Bloch et al. 2010; Phillips and Hollander 2008). These guidelines are well established in OCD; there are fewer rigorous data in BDD and illness anxiety disorder, but available data support this approach to pharmacotherapy. At the same time, many similar principles do apply across the mood disorders, anxiety disorders, and OCRDs; in particular, we would note the value of maintenance treatment in preventing relapse across these conditions.
It is worth emphasizing, however, that serotonergic antidepressants may not be effective for all of the OCRDs. Despite the seminal observation that clomipramine is more effective than desipramine in a range of OCRDs, data from trials of SSRIs in trichotillomania (hair-pulling disorder) have been surprisingly 279disappointing (although many were underpowered). Although few randomized controlled trials have focused on OCRDs with comorbid mood and anxiety disorders, it seems reasonable to use SSRIs in patients with trichotillomania (hair-pulling disorder) and a comorbid SSRI-responsive condition. There are some data indicating that SSRIs are useful in hoarding disorder, but again, there is a lack of randomized controlled trials in this area, and hoarding symptoms in patients with OCD appear less responsive to these agents (Bloch et al. 2014).
One hypothesis is that dopamine blockers are more effective in some of the OCRDs, perhaps particularly those characterized by body-focused repetitive behaviors, such as trichotillomania (hair-pulling disorder) and excoriation (skin-picking) disorder. In this regard, it is noteworthy that antipsychotic augmentation of SRIs may be particularly helpful in OCD patients with comorbid tics (compared with patients with OCD without comorbid tics). There is growing interest in the role of glutamatergic agents in the OCRDs, and although further work is needed, N-acetylcysteine can arguably be considered a first-line agent in the treatment of adult trichotillomania (hair-pulling disorder).
There are a number of similarities in the cognitive-behavioral approaches used for anxiety disorders and several of the OCRDs. Indeed, one of the rationales for placing the chapter on OCRDs immediately after the chapter on anxiety disorders was to emphasize overlaps in the phenomenology, psychobiology, and certain aspects of effective treatment approaches across these various conditions (Stein et al. 2011). Exposure, for example, is an important component of CBT treatment for anxiety disorders, OCD, BDD, and hoarding disorder and may also have a role in illness anxiety disorder. Some CBT approaches are also shared by several OCRDs; for example, response prevention is a crucial component of CBT for OCD and BDD and probably hoarding disorder and illness anxiety disorder, and habit reversal is recommended for OCRDs characterized by body-focused repetitive behaviors (trichotillomania [hair-pulling disorder] and excoriation [skin-picking] disorder) as well as for tic disorders.
At the same time, it must be emphasized that psychotherapy treatment principles should be specifically tailored to the OCRDs. There are important differences between CBT for OCRDs and CBT for the anxiety disorders, and CBT approaches within the OCRDs vary in important ways from disorder to disorder. For example, ritual prevention is important in the treatment of BDD, OCD, and probably also hoarding disorder and illness anxiety disorder, but it is not typically used to treat anxiety disorders. Regarding differences in CBT approaches to the individual OCRDs, exposure is an important component of treatment for both BDD and OCD, but in our experience exposure should be done more slowly and later in the treatment (after first learning cognitive restructuring and ritual prevention) when treating BDD. 280We also use techniques such as mirror retraining for BDD, which is not relevant to OCD. Hoarding disorder and illness anxiety disorder require a somewhat different CBT approach than that used for other OCRDs. The CBT approach to trichotillomania (hair-pulling disorder) and excoriation (skin-picking) disorder differs from that for OCRDs with a prominent cognitive component and consists largely of habit reversal training (which is also an important component of treatment for tic disorders).
An additional set of considerations are those pertaining to the use of combined pharmacotherapy and psychotherapy. Although it makes intuitive sense that pharmacotherapy and psychotherapy are complementary, there is a surprising lack of data showing that combined treatment is more effective for OCD than either pharmacotherapy or psychotherapy alone at the start of treatment (data on combined treatment are virtually nonexistent for other OCRDs). From a clinical perspective, we usually recommend concomitant use of both treatments from the start for patients who have severe illness (e.g., are housebound because of their symptoms) or who are at risk for suicide. In our view, medication should always be used initially for patients with more severe symptoms or worrisome levels of suicidality; it may also be used for more mildly or moderately ill patients.
Pharmacotherapy alone may be chosen first for a variety of reasons, including the presence of comorbid mood and anxiety disorders, patient preference, and lack of availability of CBT therapists. CBT may be useful as a subsequent added intervention in many individuals with OCRDs who are hoping to improve their response even further (and those with treatment-refractory illness) and in patients who plan to reduce medication dosage. Alternatively, CBT alone can be considered as a first-line treatment for more mildly to moderately ill patients, although patients need to be prepared to do the work that is required for such treatments to be effective (e.g., homework assignments). Motivational interviewing techniques may be used to enhance motivation to participate in CBT. Such techniques are often needed for patients with hoarding disorder or with absent-insight or poor-insight BDD or OCD.
In this section we briefly review three special populations: children and adolescents, the elderly, and patients with intellectual disability. Clinicians working with each of these populations may face a number of specific challenges, and a short review of such challenges therefore seems pertinent. We also briefly discuss gender issues in relation to the OCRDs.
Many psychiatric disorders can be conceptualized as neurodevelopmental, in that they have an early onset. Many of the OCRDs can begin prepubertally, and BDD, trichotillomania (hair-pulling disorder), excoriation (skin-picking) 281disorder, and OCD usually develop before adulthood, emphasizing the importance of this perspective. On the one hand, it is remarkable how similar the symptomatology of each of the OCRDs is across the different life stages. On the other hand, it is important for clinicians to be aware of key differences in presentations; in childhood, for example, patients are less likely to provide abstract religious or philosophical explanations (e.g., emphasizing moral purity) for their washing rituals. Children and adolescents with BDD appear to have poorer BDD-related insight than adults, perhaps reflecting less well developed metacognitive skills, which may mediate poor insight in some disorders.
It is also important for clinicians to be aware of the importance of sub-clinical hair pulling, rituals, and body image concerns in normal development and to not conflate these with trichotillomania (hair-pulling disorder), OCD, or BDD. The presence of normal concerns and rituals in childhood and the high prevalence of subclinical obsessions and compulsions in youth and adults reinforce the potential value of an evolutionary psychiatry perspective that speaks to the adaptive value of many behavioral responses (Stein and Nesse 2011).
However, it is equally if not more important to avoid making the opposite error, which is to assume that collecting, hair pulling, or body image concerns are likely normal when they occur in youth. BDD, for example, often goes undiagnosed in childhood and adolescence because clinicians or parents assume that appearance concerns are normative in this age group; misdiagnosis may result in suicide attempts and marked interference with normal adolescent development, including school dropout. It is important to assess diagnostic criteria for the relevant OCRD in any individual with OCRD-like symptoms, even if the symptoms initially appear to reflect normative concerns. Of relevance to this discussion, as noted earlier, it is common for individuals with these disorders to conceal or minimize OCRD symptoms because they are ashamed of them; thus, symptoms may actually be more severe than they appear to outside observers. The presence of clinically significant distress or impairment resulting from the obsessions/preoccupations or repetitive behaviors, in particular, signals the need for likely intervention.
Finally, we would emphasize that there are some differences in pharmacotherapy, as well as more notable and important differences in CBT, that clinicians need to be aware of when treating children. CBT for the OCRDs requires a developmentally appropriate approach. For example, CBT for youths often requires greater use of external reinforcement and rewards, and parents need to be more involved in treatment. Handouts or forms, which are important when doing CBT during sessions and for homework, must be age appropriate. Because youths have less well developed metacognitive skills, any cognitive restructuring that is done must be simpler than 282for adults; typically, more emphasis is placed on behavioral strategies. Treatment must also address adolescent developmental transitions and tasks; problems such as school refusal due to an OCRD need particular attention.
OCRDs do not commonly present for the first time in the elderly. When they do, it is particularly important to rule out the presence of an underlying medical disorder; hoarding behavior, for example, may be seen in elderly patients with early dementia. In other respects, however, the assessment and treatment of elderly patients with an OCRD may not differ very markedly from those of younger patients. From a pharmacotherapy perspective, clinicians may need to be more aware of potential drug-drug interactions and to be more cautious with higher doses of medication. From a psychotherapy perspective, in our experience patients who have had an OCRD for many years and then respond later in life to treatment may need support with the realization that they have lost so many years to the condition. This is particularly the case if the disorder has substantially interfered with the attainment of life goals, such as a career or relationships.
In patients with severe intellectual disability, stereotypic movement disorder may be an important problem, with a relatively early onset in life. In many ways, this disorder can arguably be considered the analogue of body-focused repetitive behavioral disorders that present later in life in individuals with normal intelligence. In our clinical experience, patients with mild intellectual disability may present with symptoms that are more reminiscent of OCD than of stereotypic movement disorder. Thus, for example, they may have very specific checking rituals that cause them distress (particularly if they cannot complete them) and that interfere with their daily activities. They may not be able to provide abstract explanations for why their rituals are important, as patients with OCD typically can, but in other respects their behaviors may be similar to typical compulsions. Although the literature on OCD in patients with intellectual disability is relatively sparse, in our experience standard pharmacotherapy (perhaps being more cautious about higher doses) and basic CBT techniques can be useful.
Across the OCRDs there are many pertinent gender issues to consider. In community studies, females predominate across the OCRDs. However, in clinical practice, gender ratios may be more balanced in OCD, BDD, and hoarding disorder clinics, with females predominating in body-focused repetitive behavior disorder clinics. This anecdotal observation raises the question of whether increased outreach is needed to women with OCRDs in order to facilitate treatment seeking.
In OCD, there is growing evidence that males have earlier onset of OCD and are more likely to have comorbid tics. In trichotillomania (hair-pulling disorder), onset may coincide with menarche. In several OCRDs, there is evidence of symptom exacerbation premenstrually or de novo onset in the peripartum 283period. It is important for clinicians to be particularly aware of gender issues in assessing and evaluating patients (e.g., in BDD, men are more likely to have a comorbid substance use disorder, including abuse of anabolic steroids). Although SRIs can be dosed similarly in males and females with OCRDs, it is important for clinicians to keep an eye on the growing literature indicating differences in dose requirements by sex for various psychotropics.
Much research on OCRDs has focused on efficacy rather than effectiveness trials; that is, the focus has been on earlier-stage (efficacy) trials conducted in academic settings using narrow inclusion criteria rather than on trials undertaken in clinical practice settings with broad inclusion criteria. This focus, in part, reflects the fact that far fewer treatment studies have been done on the OCRDs than on disorders such as the mood, anxiety, or psychotic disorders. The literature on pragmatic trials in mood and psychotic disorders has taught the field a great deal, and there is a need for similar work to take place in the OCRDs. There are surprisingly few longitudinal studies of the OCRDs; it is hoped that such work will emerge in future years. From a clinical perspective, it is perhaps relevant to be simultaneously proud of how much has been learned and humbled by how much remains to be understood; for many questions that our patients ask us, the evidence base does not exist to provide a very precise answer.
From a global public health perspective, the World Health Organization’s revision of the International Classification of Diseases (ICD-11) is also important. ICD-11 is focused in particular on the use of the nomenclature in a broad range of settings, including use by nonspecialized clinicians working in primary care in low-resourced areas (a description that applies to the majority of the world’s clinical population). DSM-5 and ICD-11 have broadly similar chapters and disorders in order to ensure that international practice, teaching, and research have a firm universal foundation. At the same time, the principles underlying DSM-5 and ICD-11 are somewhat different, reflecting their different mandates, and as a consequence there may be some differences between the two nomenclatures in the chapter on OCRDs. The ICD-11 principles remind clinicians of the importance of working with colleagues in primary care settings to improve diagnosis and treatment of these conditions.
While advances in global mental health characterize one important series of advances in psychiatry, another crucial set of advances is seen in work emphasizing the notion of psychiatry as a clinical neuroscience. The National Institute of Mental Health has emphasized the need for translational approaches to psychiatry research, with the possibility that such approaches 284will lead to improvements in clinical care, including personalized medicine (Insel et al. 2010). The Research Domain Criteria framework includes constructs such as cognitive inflexibility, which may ultimately lead to new ways of assessing and understanding symptoms across the OCRDs. Similarly, growing work on endophenotypes that cut across the different OCRDs may lead to advances in our knowledge of pathogenesis and to new treatment targets. Only time will tell whether such efforts will succeed, but in the interim, from a clinical perspective, these approaches are arguably important in giving both clinicians and patients hope for the future.
Consumer advocacy is already playing an important role in OCRDs. The International OCD Foundation and the Trichotillomania Learning Center, for example, provide up-to-date information on their Web sites, take calls from mental health consumers, and make referrals. In addition, these organizations have funded a range of significant research in the field. Importantly, the inclusion of excoriation (skin-picking) disorder in DSM-5 gathered momentum not only because of the increased research data available on this condition over recent decades but also because of clear feedback from consumer organizations and from individual patients indicating that such inclusion would improve diagnosis and treatment for many individuals around the world (Stein and Phillips 2013). In the future, we hope and expect that consumer participation in setting research agendas will grow, and we urge clinicians to be aware of the work of consumer organizations, to be involved with them, and to provide support.