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Obsessive-Compulsive Disorder (OCD)

Overview

This resource provides guidance to primary care clinicians and related professionals to diagnose and manage children and youth with obsessive-compulsive disorder (OCD).
OCD is characterized by time-consuming obsessions and/or compulsions that substantially impair the life and daily function of the individual engaging in them. Obsessions can be described as repetitive, intrusive thoughts, fears, and/or urges that cause distress and anxiety. To alleviate this anxiety, individuals may perform compulsions, a pattern of repetitive actions, and/or engage in thoughts which may or may not be associated with the obsession. For example, a person may feel their house may catch on fire (obsession) if they do not repetitively check to determine if their front door is locked (compulsion).
Although mixed findings and some controversy exist on the ages of onset for OCD, trends suggest an early onset and later onset. Early onset occurs before puberty, with later onset occurring around young adulthood (~18 years old). In general, earlier onset is associated with increased neurobiological, cognitive, and increased comorbidity with other mental health disorders (e.g., major depression, ADHD, Tourette’s syndrome) compared to later onset, which tends to have more of an episodic course and less severe symptoms. [Albert: 2015] [Kim: 2020]
Individuals with OCD are at risk for a compulsion becoming a learned, inflexible decision. With each obsessive, anxiety-provoking episode, the individual may rely on the habit (compulsion) to decrease the anxiety, teaching the patient that they must perform the compulsion to decrease anxiety. [Gruner: 2016] This ultimately becomes reinforcement-driven learning, making it difficult for patients to stop the learned behavior. [Gruner: 2016]
Genetics, environment, and neurobiology all have a role in the development of OCD. It is thought that there is dysfunction in the cortico-striato-thalamo-cortical (CSTC) feedback loop (neural pathway). Moreover, abnormal serotonergic and dopamine neurotransmission have been linked to OCD symptoms.
Because early intervention can lessen the severity of the disease, it is important for the clinician to screen for OCD and provide appropriate therapeutic interventions, including pharmacotherapy and cognitive behavioral therapy. Because of abnormal serotonergic neurotransmission underlying OCD symptoms, SSRIs are typically the pharmacological intervention of greatest efficacy. Moreover, as previously mentioned, OCD can be associated with significant comorbid disorders, including mood and anxiety disorders, obsessive-compulsive spectrum disorders, tic disorders, and self-injurious behaviors. [Lochner: 2014] The number of comorbid disorders that often require targeted interventions correlates with the OCD severity. [Lochner: 2014]

Other Names & Coding

ICD-10 coding

F42, Obsessive-compulsive disorder

F42.2, Mixed obsessional thoughts and acts

F42.3, Hoarding disorder

F42.4, Excoriation (skin-picking) disorder

F42.8, Other obsessive-compulsive disorders

F42.9, Obsessive-compulsive disorder, unspecified

OCD is not the same as Obsessive-Compulsive Personality Disorder.
For coding details, see Obsessive-Compulsive Disorder F42-(icd10data.com). The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) usually designates the same codes as the ICD-10, but its publisher, the American Psychiatric Association, prohibits including their codes or descriptions. [American: 2013]

Prevalence

Obsessive-compulsive disorder is found in about 4% of the general population. [Nazeer: 2020] The prevalence of OCD among children and adolescents is about 2%. [Zohar: 1999] Males tend to have an earlier age of onset and are thus more affected in childhood than girls. Females generally have symptom onset during or after puberty or pregnancy, and OCD becomes more common among females in adolescence and adulthood. [Mathes: 2019]
The lifetime prevalence of OCD among adults in the US was 2.3 percent. [National: 2019] A high rate of co-occurrence exists between autism spectrum disorder (ASD) and OCD. [Martin: 2020] individuals with a personal history of autism spectrum disorders have double the risk of receiving a diagnosis of OCD later in life, and a personal history of OCD quadrupled the risk of being diagnosed with ASD. [Meier: 2015]

Genetics

Heredity plays a substantial role in patients’ susceptibility to OCD; several studies have shown a fivefold increased risk for people with first-degree relatives who have OCD. Twin studies demonstrate an inherited component with 65% concordance for OCD among monozygotic twins. [Eley: 2003] GRID2 is a gene expressing subunit of an ionotropic glutamate receptor and is highly expressed in the cerebellum as well as caudate, putamen, nucleus accumbens, and anterior cingulate cortex. The glutamatergic signaling system is important in OCD; upregulation of the GRID2 gene may increase the risk of OCD. [Arnold: 2018] Additionally, serotonin-related genetic variants have been found to be related to the phenotypic expression of OCD, including HTR3 variants. [Kim: 2016]

Prognosis

Patients with OCD can have significant, persistent impairment. Those with severe OCD may see moderate improvements with treatments; however, it is less likely for patients to see improvement to a moderate symptom level if they have been consistently and severely ill for 3 years or more. A history of being homebound for a week or more due to OCD was the strongest predictor of unremitting OCD. OCD is often associated with other comorbid disorders, including major depressive disorder (MDD) and obsessive-compulsive personality disorder (OCPD), which could cause individuals to present with more severe OCD symptoms and make it difficult to achieve symptomatic improvement. [Garnaat: 2015]

Practice Guidelines

Bandelow B, Sher L, Bunevicius R, Hollander E, Kasper S, Zohar J, Möller HJ.
Guidelines for the pharmacological treatment of anxiety disorders, obsessive-compulsive disorder and posttraumatic stress disorder in primary care.
Int J Psychiatry Clin Pract. 2012;16(2):77-84. PubMed abstract

Geller D, March J.
Practice parameter for the assessment and treatment of children and adolescents with obsessive-compulsive disorder.
J Am Acad Child Adolesc Psychiatry. 2012;51(1):98-113. PubMed abstract / Full Text

Koran LM, Hanna GL, Hollander E, Nestadt G, Simpson HB.
Practice guideline for the treatment of patients with obsessive-compulsive disorder.
Am J Psychiatry. 2007;164(7 Suppl):5-53. PubMed abstract

Roles of the Medical Home

Different approaches and/or teams may be needed to provide optimal support and treatment for individual patients with OCD. [Gilbert: 2008] Medical home clinicians can screen for OCD, educate families and patients about the disorder, prescribe and monitor treatments, and refer to child and adolescent psychiatrists when necessary. In addition to making referrals, the medical home clinicians will continue to treat the patient and coordinate care among other medical staff and behavioral health providers.
Though primary care clinicians may not have training in cognitive behavioral therapy or exposure to response prevention, they may manage pharmacotherapy (as many primary care physicians have experience with serotonin reuptake inhibitors). If OCD is severe or the patient uses 2 different types of SSRIs along with CBT and still has unsatisfactory improvement, referral to a psychiatrist is likely needed. [Fenske: 2015] The medical home should remain connected with the OCD treatment team to ensure efficacy and compliance.
In addition, primary care clinicians should screen for comorbid psychiatric conditions and evaluate suicide risk. In clinical samples, the mean rate of suicide attempts in individuals with OCD is 14.2%, with studies showing OCD increases the odds of having lifetime suicidal ideation and lifetime suicide attempts compared to the general population. [Albert: 2019]

Clinical Assessment

Overview

Childhood- and adult-onset OCD overlap greatly, and the presentation in both groups is heterogeneous. Symptoms found in children and adults include contamination/washing, symmetry/ordering, checking, and hoarding, suggesting that these symptoms appear early in the illness and can remain stable throughout life. [Gilbert: 2008]
Note that autism can present with symptoms of OCD, including compulsive/ritualistic behaviors, verbal rituals, and sensory interests. Yet, while they can share similar symptomatology, they are distinct but a highly comorbid disorder. [Ruzzano: 2015] See Autism Spectrum Disorder.
Tourette syndrome (TS), a childhood-onset neuropsychiatric disorder where the primary symptoms are motor and vocal tics, commonly presents with additional symptoms and comorbid disorders, including OCD and ADHD. TS, OCD, and ADHD are highly heritable with a significant genetic correlation. As a result, children whose families have TS may be at increased risk for TS, OCD, or any combination. [Mathews: 2011] See Attention-Deficit/Hyperactivity Disorder (ADHD) and Tourette Syndrome.
As discussed, OCD is associated with high suicidal behavior, and thus patients must be assessed for suicide risk. [Torres: 2011] See Suicidality & Self-Harm.

Screening

For the Condition

OCD often goes unrecognized in young people who may feel embarrassed by symptoms and uncomfortable disclosing their struggles with OCD. [Uher: 2007] While there is not a specific screening guideline for pediatrics in the United States, the United Kingdom’s The National Institute for Health and Clinical Excellence (NICE) recommends routine screening of young people at risk in general practice [Uher: 2007] since early detection and intervention can lead to better outcomes. Since OCD is associated with concomitant psychiatric disorders, OCD can be evaluated when there are other neuropsychiatric concerns, including anxiety and depression. [Ivarsson: 2008]
The Short Obsessive-Compulsive Disorder Screener (SOCS)is recommended by NICE for ages 11 through 15 years in the primary care setting. [Piqueras: 2015] This measure is free, short, easy, highly sensitive, reasonable, and widely available. [Piqueras: 2015]
The Child Behavior Checklist (CBCL) is an empirical-based scale covering 113 different child psychiatric symptoms that are potentially present in the patient along with severity. [Ivarsson: 2008] If there are concerns that the patient has OCD, further evaluation can be done using a specific diagnostic work-up including the Children’s Yale-Brown Obsessive-Compulsive Scale (CYBOCS). [Ivarsson: 2008]

Of Family Members

A salient family history of anxiety and mental health problems is often helpful, but no formal screening is currently recommended at this time.

Presentations

The presentation of OCD is incredibly diverse, with children and adolescents exhibiting a wide range of obsessions and compulsions. Primary symptom categories include: [Bloch: 2008]
Aggressive
  • Obsession: thinking violent thoughts of harming someone
  • Compulsion: needing constant reassurance that they are being a good person
Contamination
  • Obsession: excessive fear of dirt, germs, and infections
  • Compulsions: cleaning rituals
Religion
  • Obsession: thoughts against their personal religion or worries of eternal damnation
  • Compulsion: asking for forgiveness and excessive praying
Sexual
  • Obsession: sexually deviant thoughts and inappropriateness
  • Compulsion: avoiding triggers and doing mental rituals to decrease the obsession
Symmetry/ordering/repeating/checking
  • Obsession: with order and symmetry
  • Compulsion: constantly rearranging and counting
Superstition
  • Obsession: fears of colors, numbers, or objects that are not socially deemed scary
  • Compulsion: avoiding colors, numbers, or the inciting factor
Hoarding: is characterized by excessive collecting and failure to discard the excessive amounts of collected items. Patients feel significant distress and impairment due to hoarding. It is common in patients with OCD and compulsive hoarding to hoard bizarre items, including feces, nails, and rotten food. These individuals also have obsessions and compulsions related to hoarding including fear of catastrophic consequences if they discard these possessions. [Pertusa: 2008] Hoarding is a common comorbid condition (~41%) in pediatric populations of individuals with an autism spectrum disorder, particularly if the child on the autism spectrum has other psychiatric conditions of attention deficit hyperactivity disorder, anxiety, and is female. [La: 2018]

Diagnostic Criteria

Diagnosis of OCD is based on a clinical assessment. Defining features include the presence of obsessions, compulsions, or both that are time-consuming, distressing, impair daily function, and not a result of another medical condition or substance abuse. Clinicians primarily refer to the DSM-5 criteria for diagnosis.
Obsessions: Intrusive, persistent thoughts that can cause distress. Patients will try to suppress these thoughts to decrease the anxiety that comes with the obsession.   
Compulsions: Repetitive behaviors that the patient relies on in hopes of decreasing the anxiety coming from the obsession. The patient feels the urge to perform the compulsions and rigidly adheres to the compulsion. These compulsions may not necessarily be related to the obsession.
The obsession or compulsion must take at least 1 hour a day to perform, cause distress, and impair daily functions.

Differential Diagnosis

OCD can have features that overlap with other disorders. For example, both autism and OCD share similar symptoms, including repetitive behaviors.
Excessive worry may be due to Anxiety Disorders, illness anxiety disorder (previously known as hypochondriasis) or excessive preoccupations about a disease, panic disorder, separation anxiety disorder, adjustment disorder, substance use (Substance Use Disorders), abuse/trauma, hyperthyroidism, and major depressive disorder (MDD) (Depression). Individuals with depression can have excessive worry associated with ruminative thoughts that are linked to mood.
Ruminative behavior or thoughts can be related to Autism Spectrum Disorder (FAQ), Attention-Deficit/Hyperactivity Disorder (ADHD), schizophrenia, delusional disorder, delirium, temporal lobe epilepsy, and abuse/trauma (see Toxic Stress Screening).
Intrusive thoughts surrounding negative body image can be seen in patients with eating disorders (including anorexia, bulimia, binge eating disorder) or body dysmorphic disorder. Compulsions, or repetitive behaviors, may also be seen in patients with autism, tic disorders, trichotillomania, compulsive behaviors (gambling or substance use), and abuse/trauma. It is important to note that with obsessive-compulsive personality disorder (OCPD), patients can have maladaptive traits and behaviors that interfere with daily life, such as rigidity and perfectionism. This excessive perfectionism can create ritualized behavior. However, OCPD rituals are not associated with any obsessions or compulsions, making this different from OCD.

Comorbid & Secondary Conditions

Many patients who have OCD have concomitant psychiatric disorders. It’s important to note the different types of comorbid conditions that can ultimately influence the type of treatment and the outcomes.
Major depressive disorder (MDD)
  • Depression is the most frequent comorbidity with OCD.
  • MDD is 10 times more prevalent in patients with OCD than in the general population, and at least 1/3 of patients with OCD have concurrent MDD. [Pallanti: 2011]
Bipolar disorder
  • The overlap between OCD and bipolar disorder is about 15-35%. [Pallanti: 2011]
  • The rate of lifetime comorbid bipolar disorder with OCD is up to 21.5%. [Pallanti: 2011]
Autism spectrum disorder (ASD)
  • ASD is found in pediatric and adult populations with OCD at levels exceeding those in the general population. [Ivarsson: 2008]
  • That patients with OCD may present as classic anxiety or may look more like ASD, which may complicate treatment. [Ivarsson: 2008]
  • A primary difference between OCD and ASD is that OCD behaviors are meant to alleviate the anxiety, and there is an unpleasant awareness that the behaviors may be irrational. ASD lacks this awareness. Current treatment relies on exposure with response prevention and SSRI primarily to reduce anxiety in patients with OCD. Anxiety is less of an issue for patients with ASD.
  • For patients with ASD, contingency management or reinforcement of behavioral change is primarily used as treatment. [Ivarsson: 2008]
Schizophrenia
  • The prevalence of comorbid OCD and schizophrenia is about 12.2%. [Pallanti: 2011]
Other anxiety disorders
  • OCD has a comorbidity of around 22% for a specific phobia, 18% for social anxiety disorder, 12% for panic disorder, and 30% for generalized anxiety disorder. [Pallanti: 2011]
Neurological disorders
  • The association between OCD and epilepsy is well-known. About 10-22% of patients with temporal lobe epilepsy may have OCD. [Pallanti: 2011]
  • OCD can also be associated with Tourette’s syndrome, Sydenham’s chorea, Huntington’s disease, and von Economo’s encephalitis. [Pallanti: 2011]
  • About 1/3 to 1/2 of children with Tourette syndrome or a chronic disorder will experience OCD. [Pallanti: 2011]
Attention-Deficit Hyperactivity Disorder (ADHD)
  • ADHD is a common comorbid condition with OCD.
  • ADHD, OCD, and Tourette syndrome are frequently seen together.

History & Examination

Current & Past Medical History

Ask about obsessions and compulsions, their intensities, and how they have negatively impacted day-to-day functioning:
Obsessions:
  • Do you have any disturbing or unwanted thoughts that take a lot of time out of your day?
  • Do you have thoughts of being contaminated?
  • Do you have violent images or thoughts?
  • Do you find these thoughts or impulses intrusive or unwanted? How do they make you feel?
  • Is it hard to resist thinking these thoughts or actions?
Compulsions:
  • Do you feel driven to do things that don’t make sense or that you don’t want to do, but worry that if you don’t do them, then something bad will happen?
  • Do you check things repeatedly, like checking the lock many times before leaving home?
  • Do you repeatedly count or rearrange items, like putting items in a certain order or pattern until they feel right?
  • Do you wash your hands over and over again?
  • Does it make you feel less anxious? Does it help relieve the anxiety?
Because of the numerous comorbid psychiatric illnesses associated with OCD, patients should be asked about other mental health/behavioral disorders. In addition, always assess for suicide risk.

Family History

Providers should ask about OCD and other mental disorders in family members. Children with first-degree relatives who have OCD have an increased risk for it. OCD, like many other psychological disorders, has a strong genetic component.

Pregnancy/Perinatal History

Ask about OCD symptoms during pregnancy and postpartum since OCD can begin or worsen during these times. [Kaminsky: 2020] Thoughts of harming the newborn are a common obsessive thought in this population. [Maina: 1999] Thus, an understanding of newborn safety is crucial. OCD is more frequently associated with delivery by Cesarean section without labor, so ask about any complications during the pregnancy. [Maina: 1999] In addition, OCD during the perinatal period is greater in women with comorbid depression. [Kaminsky: 2020] As a result, clinicians should ask patients not only if they are experiencing OCD symptoms but also about symptoms that would be concerning for other mental disorders. See Postpartum Depression Screening.

Developmental & Educational Progress

It is important to consider an evaluation for OCD or other mental health disorders in children who have decreased academic performance. Ask about how the child is performing in the classroom. Due to the intensity of obsessions or compulsions, children can find it difficult to concentrate and learn; performance can quickly deteriorate. Behaviors that may be more salient to OCD in the school setting would be fear of contamination associated with frequent hand washing and washing of personal materials, double-checking locks, and seeking reassurance of corrected answers through a repetitive line of questioning, not being able to move on to a different task, and attempting to re-do activities and/or schoolwork to perfection.
Although OCD that occurs with intellectual disabilities is about the same as in the general population, communication issues can make diagnosis and treatment more difficult. In these cases, it is important to evaluate the observable behavioral components of OCD rather than focusing solely on the internal conflicts and anxiety. [Gautam: 2015]

Social & Family Functioning

When evaluating the patient and family members, consider asking:
  • How much time per day is spent managing the obsessions/compulsions?
  • How has OCD impacted their physical and emotional wellbeing?
  • What are the effects of symptoms on relationships with family and friends?
  • How does it affect schoolwork?
Parents can be interviewed to help give a better understanding of the child’s OCD. However, parents may underreport OCD symptoms and the extent that the child is experiencing anxiety. Parents may think that the symptoms are a “phase” and not seek appropriate medical management. Children may not recognize that their behaviors are not normal, or they may feel shame and not report to their parents.

Physical Exam

General

A standard physical exam is important to identify or rule out comorbid or coincident conditions. OCD may not necessarily manifest with physical anomalies, but certain physical findings can raise concern for OCD. During the physical exam, the patient may repeat phrases, tap, or count excessively. Additionally, a physical exam can reveal observable bodily signs of OCD, such as signs of fingernail picking.

Vital Signs

Elevated blood pressure and mild tachycardia can occur with anxiety but may be related to anxiety about being in a clinic; consider home monitoring if unclear.

Skin

Look for excoriations that could be related to skin picking, eczema around the hands associated with excessive hand washing, or group A strep skin rash that might suggest PANDAS.

HEENT/Oral

Sudden sore throat, tonsillo-pharyngeal inflammation, patchy tonsillo-pharyngeal exudates, palatal petechiae, and cervical lymphadenitis could suggest group A Streptococcal infection (GAS). Worsening OCD symptoms concurrent with or 2-4 weeks after the initial infection could be due to PANDAS (pediatric autoimmune neuropsychiatric disorder associated with group A Streptococci), discussed in Treatment & Management.

Chest

Patients with OCD have a higher rate of developing respiratory illnesses, asthma, and allergies, possibly due to abnormal immune responses as well as enhanced bronchoconstriction. [Witthauer: 2014]

Heart

Patients who have OCD are at increased risk for cardiovascular complications, primarily due to developing metabolic syndromes. [Isomura: 2018]
Patients with congenital heart disease have a higher rate of lifetime psychiatric diagnosis, including psychiatric disorders like OCD. [DeMaso: 2017]

Abdomen

High prevalence and severity of gastrointestinal symptoms may be an important clinical consideration when treating OCD patients. [Turna: 2019] Patients with OCD have a higher prevalence of gastrointestinal symptoms, primarily irritable bowel syndrome (IBS), possibly due to disturbance in the gut-brain axis. [Turna: 2019]

Neurologic Exam

Injury to the prefrontal cortex from accidents, strokes, or other naturalistic causes can lead to the development of OCD.

Testing

Laboratory Testing

There are currently no biomarkers available for the diagnosis of OCD. Evaluating thyroid function and electrolytes, as well as a complete blood count, may identify an underlying medical condition causing symptoms. If children have a history or symptoms concerning for group A Streptococcal infection (GAS), a throat culture, antistreptococcal antibody (ASO), and anti-DNase B titers may be warranted; positive findings could suggest PANDAS.

Imaging

Several neuroimaging studies have shown that, on average, OCD patients have abnormal findings on brain imaging. CT and MRI scans both show significantly lower caudate nucleus volume in patients with OCD compared to normal controls, while other areas, such as the prefrontal cortex, are normal. [Parmar: 2016] Despite these findings, imaging is not indicated in diagnosing OCD.

Genetic Testing

Currently, there are no recommendations for genetic testing to diagnose OCD.

Specialty Collaborations & Other Services

Psychiatry/Medication Management (see NW providers [0])

Refer if help is needed sorting out among differential diagnoses or diagnosis is complicated by co-existing mental or medical conditions.

General Counseling Services (see NW providers [1])

Refer if assistance is needed in evaluation, particularly if the diagnosis does not feel straightforward.

Treatment & Management

Overview

A standardized rating scale of the severity of impairment of symptoms should be administered before and during treatment of OCD; see Clinical Tools for available instruments.

Pearls & Alerts for Treatment & Management

Comorbidities are the rule, rather than the exception

OCD is frequently associated with other mental health issues, including mood disorders, anxiety disorders, ADHD, and tic disorders. Therefore, identification of obsessions or compulsions warrants additional exploration and treatment of other mental health concerns.

Antidepressant medications may be activating for some children with neurodevelopmental disorders

Although commonly used to treat anxiety disorders, antidepressants may have a paradoxical effect and increase anxiety and/or agitation in some children, especially those with neurodevelopmental disorders. Starting at a lower dose for children with neurodevelopmental disorders may reduce this effect.

How should common problems be managed differently in children with Obsessive-Compulsive Disorder (OCD)?

Growth or Weight Gain

Children and adolescents with OCD can have food selectivity or food phobias. [Bozzini: 2019] This ultimately can cause unwanted weight loss and growth restrictions. It is important to understand whether eating concerns stem from OCD, psychiatric comorbidities like anorexia nervosa, avoidant-restrictive food intake disorder (ARFID), or even benign causes. [Bozzini: 2019]
Eating problems related to OCD may be difficult to differentiate from a primary eating disorder, and referral to a dietitian and/or mental health specialist may be helpful.
Note that pharmacotherapies like clomipramine or SSRIs can be associated with weight gain that can impact the child’s overall health.

Development (Cognitive, Motor, Language, Social-Emotional)

Children with OCD significantly underperform in tasks measuring and processing speed compared to children without this disorder. [Bernardes: 2020] Similarly, they also have significant underperformance in spatial non-verbal working memory. [Bernardes: 2020]
Some research has shown higher verbal but lower performance IQ scores in pediatric patients at high risk for OCD. [Bernardes: 2020]
Children with OCD were more likely to have impaired recognition of facial expressions like disgust, social cue perception, and poorer emotional regulation abilities, which all can contribute to social functioning deficiencies. [Jansen: 2020]
Despite these neurocognitive and social deficits, early treatment of OCD has been shown to improve deficits. [Bernardes: 2020]

Prescription Medications

Be aware of potential drug interactions, such as serotonin syndrome or increased suicidal thinking, if the patient takes antidepressant medication.

Common Complaints

Patients with OCD are at higher risk of dermatitis and skin infections. Recurrent dermatitis can both exacerbate and be a result of chronic hand-washing. Psychological support for the cause and effect of dermatitis should be considered. [Kouris: 2015]

Systems

Other

Determining Level of Care
After an assessment of the patient, the provider can make an initial recommendation based on the severity of symptoms, efficacy of previous treatments, and patient and family preferences and needs. Ultimately, patients, family members, and providers will work together when creating a treatment plan.
  • Outpatient Treatment: Not at imminent risk of harm to self or others, accepting of and cooperative with treatment, good coping skills and internal resources, and a supportive environment. Generally, outpatient treatment includes seeing a therapist weekly as well as possible medication use. Clinicians can prescribe and monitor medication use and side effects.
  • Intensive Outpatient or Partial Hospitalization (Day Treatment): Not at imminent risk of harm to self or others, some resistance to change, limited engagement in outpatient therapy, limited use of coping skills, academic decline due to symptoms, concern for environmental supports that requires more frequent intervention. Day treatment level of care hours usually simulates school during weekdays, with weekends and nights at home. During programming, patients receive medication management, intensive therapeutic support, and academic support.
  • Residential Facility (clinically managed, low-intensity; medium/high intensity; 24/7 medically monitored and high intensity): Moderate to severe biomedical or emotional concerns requiring monitoring and behavioral and/or medical intervention that cannot be done in the home setting.
  • Medically-Managed Inpatient Hospital Services: Imminent risk of harm to self or others, moderate to severe biomedical and/or emotional concerns. Treatment is provided in a locked unit at a mental health hospital, either on a voluntary or involuntary basis. The goal is to stabilize the patient and transition to a lower level of care.

Mental Health/Behavior

Cognitive-behavioral therapy (CBT) is considered most effective for OCD and to have greater efficacy than pharmacotherapy. [Hirschtritt: 2017] CBT involves cognitive reappraisal and restructuring of thoughts, in which experienced practitioners help patients identify maladaptive and illogical beliefs about the obsessions. It also includes behavioral interventions where the patient is exposed to the obsession triggering stimuli in a controlled environment and provided instructions on how to avoid the compulsive behavior. CBT is an effective treatment and can serve as a first-line treatment for some patients. [Pittenger: 2005]
However, CBT has its limitations, including scarcity of trained clinicians, time commitment for the patient, and motivation to engage in CBT and follow through with assignments outside of therapy. [Hirschtritt: 2017] It is important to help families find specialists who have been trained in CBT or exposure to response prevention to help effectively treat OCD. The International OCD Foundation (OCDF) is a source for locating specialists, therapists, and psychiatrists with training and this kind of experience. See Find Help (OCDF).

Specialty Collaborations & Other Services

Psychiatry/Medication Management (see NW providers [0])

Initially, many patients will be evaluated in the primary care setting. Primary care clinicians can start patients on the initial pharmacotherapies of SSRIs and/or CBT. [Fenske: 2015] However, if patients fail to respond to at least 2 SSRI trials, it is recommended that they be referred to a psychiatrist. [Fenske: 2015] Consider referral when the patient is struggling with severe OCD symptoms, as indicated by the initial assessment. [Fenske: 2015]

General Counseling Services (see NW providers [1])

Refer for diagnosis of comorbid psychiatric conditions and treatment if indicated.

Family Counseling (see NW providers [0])

Family-based treatments can increase the effectiveness of OCD treatments (by providing family members with skills to support the patient) and demonstrate marked improvement in symptom and functional response. [Thompson-Hollands: 2014] While there is no recommended age for when a family should start counseling, it is important to note that younger patients have lower levels of insight and a lower baseline to want to change their behavior, so family involvement is important. [Thompson-Hollands: 2014]

Pharmacy & Medications

Cognitive-behavioral approaches and selective serotonin reuptake inhibitors (SSRIs) are the primary treatments for OCD. Patients will experience symptomatic relief with either treatment or in combination; often, they are used concurrently. [Pittenger: 2014] While the primary care clinician cannot prescribe specific accommodations in the educational setting, a letter of support for a child’s 504 Plan stating the diagnosis and suggested interventions may be helpful for the school. However, despite this relief, about 40-60% of patients state they have residual impairing symptoms. [Hirschtritt: 2017] Adding an antipsychotic (either a typical or atypical) can be effective in reducing OCD symptoms, as well as the comorbid tics. [Hirschtritt: 2017] However, it is recommended that if no improvement occurs after 6 to 10 weeks with the addition of the antipsychotic, the antipsychotic should be discontinued because it can have significant metabolic and extrapyramidal side effects. [Hirschtritt: 2017]
Serotonin Reuptake Inhibitors (SSRIs)
SSRIs are the first-line pharmacologic treatment for OCD. They decrease OCD symptoms and are well tolerated. [Pittenger: 2005] Numerous trials show no major differences among the SSRI groups, and all SSRIs can be equally efficacious. [Hirschtritt: 2017] To gain optimal effects, place patients on the maximally tolerated dose for 8-12 weeks to assess responsiveness. [Hirschtritt: 2017] It is also recommended that patients continue the SSRI medication for at least 6-12 months. [Hirschtritt: 2017] Cessation of the SSRI is associated with relapse; more than half of patients with OCD who responded to an SSRI will experience a relapse of symptoms within 6 months of stopping the medication. [Hirschtritt: 2017] Even with a taper to stop the SSRI, after 1 to 2 years of remission, most patients will require indefinite continuation of the SSRI. [Janardhan: 2017]
Clomipramine
The serotonin selective tricyclic antidepressant (TCA) clomipramine is considered second-line treatment for patients who do not respond to SSRIs. [Hirschtritt: 2017] Clomipramine has substantial anticholinergic effects, including dry mouth, blurred vision, constipation, fatigue, tremors, and hyperhidrosis, which are generally not seen with SSRIs. [Pittenger: 2014] Likewise, at higher dosages, clomipramine can cause arrhythmias and seizures, and requires monitoring. [Hirschtritt: 2017]

Immunology/Infectious Disease

Pediatric autoimmune neuropsychiatric disorders associated with streptococci (PANDAS) is a group of neuropsychiatric disorders, including OCD, with sudden onset following an infection with group A beta-hemolytic Streptococci. It is thought that through molecular mimicry, antibodies that are targeting the bacteria are cross-reacting with the antigens found on the basal ganglia, which can cause these neuropsychiatric symptoms. [Macerollo: 2013] Patients’ symptoms will present in waves with periods of exacerbations followed by decreasing severity. [Swedo: 1998] Overall, the symptoms will resolve over several months. [Swedo: 1998] Generally, PANDAS is a clinical diagnosis, and there is a high clinical suspicion when the patient has a sudden onset of OCD symptoms with a recent group A Streptococci infection.
It is unclear what is the best treatment. Some studies have shown penicillin prophylaxis to be effective, with significant rapid improvements of OCD in PANDAS patients. [Macerollo: 2013] However, these studies were not randomized, placebo-controlled trials and had several flaws in the design. [Macerollo: 2013] Similarly, it has not been proven that immunotherapy can help with PANDAS OCD. [Kurlan: 2004] Therefore, it is currently recommended that PANDAS patients with OCD can try routine treatments, including SSRI and CBT. [Macerollo: 2013]

Surgery

OCD has been associated with abnormalities in the corticostriatal-thalamic-cortical circuits connecting the orbitofrontal cortex, anterior cingulate, basal ganglia, and thalamus. [Hirschtritt: 2017] While not typically used in pediatrics, ablation of the abnormal circuitry can be used in adults with severe treatment-refractory symptoms and has been shown to have a 50- 60% response rate within 6-24 months. [Hirschtritt: 2017] The invasiveness of the neurosurgical techniques and limited evidence for efficacy make these approaches less optimal than SSRI and CBT and should be considered only in treatment-refractory cases. [Hirschtritt: 2017]

Ask the Specialist

I have just identified a teen in my practice with obsessive-compulsive disorder. What treatment facility can I refer her to?

Treatment facilities offer interdisciplinary care with physicians, psychologists, nurses, and social workers who primarily treat OCD-specific symptoms. Usually, they are recommended for patients who have unsuccessfully tried outpatient programs, including medications and outpatient therapy. A referral from a primary care physician or psychiatrist is necessary to be admitted. The International OCD Foundation lists OCD treatment facilities in the preferred geographical location for providers and their patients.

How clinically relevant is OCD for a pediatrician or primary care physician?

OCD often goes underdiagnosed, and it can take years for patients to receive the appropriate treatment. Primary care physicians play a crucial role in making the correct diagnosis and educating patients. It is important for physicians to strive for early diagnosis and the correct treatment to decrease the distress many patients with OCD face. Primary care physicians should consider OCD in patients with anxiety, depression, or possible hints of intrusive thoughts or repetitive behaviors. Primary care clinicians can then further evaluate the patient using screening tools. During this evaluation, recognize that OCD has different subtypes and that different subtypes will respond differently to each treatment.

My patient has treatment-resistant OCD. What should I do next?

Patients should first try both SSRIs and CBT. If this does not work, the patient may need a referral to psychiatry for second-line therapies. Patients with OCD need to be monitored carefully for possible comorbid mental health disorders or adverse side effects from medications. Ultimately, it is important to have early identification of treatment-resistant OCD.

Resources for Clinicians

On the Web

Resources for Primary Care (AACAP)
A resource center for clinicians treating substance use disorders and mental health issues. Includes practice parameters, a guide for integrating mental health care into the medical home, and information about policy and advocacy; American Academy of Child & Adolescent Psychiatry.

Mental Health Initiatives (AAP)
An online resource for clinicians treating mental health issues in the pediatric population. This includes clinical algorithms, care management advice, step-by-step care plans, as well as links to organizations pertaining to children’s mental health issues; American Academy of Pediatrics.

Educational Resources for Managing OCD (International OCD Foundation)
Peer-reviewed articles, books, informational guides in multiple languages for patients, newsletters, podcasts, and more to help with treating all aspects of OCD (e.g., psychoeducation, treatment, support groups).

Helpful Articles

Cervin M, Lázaro L, Martínez-González AE, Piqueras JA, Rodríguez-Jiménez T, Godoy A, Aspvall K, Barcaccia B, Pozza A, Storch EA.
Obsessive-compulsive symptoms and their links to depression and anxiety in clinic- and community-based pediatric samples: A network analysis.
J Affect Disord. 2020;271:9-18. PubMed abstract

Janardhan Reddy YC, Sundar AS, Narayanaswamy JC, Math SB.
Clinical practice guidelines for obsessive-compulsive disorder.
Indian J Psychiatry. 2017;59(Suppl 1):S74-S90. PubMed abstract / Full Text

Nazeer A, Latif F, Mondal A, Azeem MW, Greydanus DE.
Obsessive-compulsive disorder in children and adolescents: epidemiology, diagnosis and management.
Transl Pediatr. 2020;9(Suppl 1):S76-S93. PubMed abstract / Full Text

Pediatric OCD Treatment Study (POTS) Team.
Cognitive-behavior therapy, sertraline, and their combination for children and adolescents with obsessive-compulsive disorder: the Pediatric OCD Treatment Study (POTS) randomized controlled trial.
JAMA. 2004;292(16):1969-76. PubMed abstract

Sarvet B.
Childhood obsessive-compulsive disorder.
Pediatr Rev. 2013;34(1):19-27; quiz 28. PubMed abstract

Weidle B, Jozefiak T, Ivarsson T, Thomsen PH.
Quality of life in children with OCD with and without comorbidity.
Health Qual Life Outcomes. 2014;12:152. PubMed abstract / Full Text

Clinical Tools

Assessment Tools/Scales

Children’s Yale–Brown Obsessive Compulsive Scales (CY-BOCS) (PDF Document 50 KB)
The Yale-Brown Obsessive-Compulsive Scales (Y-BOCS) and the CY-BOCS children’s version are considered the gold standard for OCD assessment and monitoring of treatment outcomes. A semi-structured interview administered by a clinician with 10 items rated on a scale that evaluates symptoms and severity of OCD. The major components evaluated are frequency, interference, distress, resistance, and control. It is free, and the most commonly used scale to assess OCD and monitor treatment outcomes.

Brief Obsessive-Compulsive Scale (BOCS) (PDF Document 90 KB)
The BOCS is a short, self-report derivation of the Y-BOCS. It is a self-administered 15-item Symptom Checklist related to the DSM-5 OCD category. It also includes a 6-item Severity Scale for obsessions and compulsions combined. It includes a revisional CY-BCOS severity scale. The benefit of this scale is that it is brief and potentially more user-friendly in a busy primary care setting as the Y-BOCS is time-consuming. However, no data suggest that it can replace Y-BOCS or CY-BOCS for both assessment and monitoring treatment outcomes.

Obsessive-Compulsive Inventory – Child Version (OCI-CV) (Obsessive-Compulsive Inventory (OCI)) (div12.org) (PDF Document 1.2 MB)
Includes 21 questions that encompass obsessions, hoarding, washing, ordering, and neutralization. While it is not as complete as CY-BOCS, it captures the most common symptoms. It is self-reporting and is a shorter format, making it easy to administer. It is considered valid and clinically used along with CY-BOCS.

OCD Subscales of the Child Behavior Checklist (CBCL-OCS)
A parent-report questionnaire to assess numerous behavioral problems in children. Within the questionnaire, there is an 8-item obsessive-compulsive scale. This can identify not only OCD but also comorbid psychiatric illnesses and pediatric neuropsychiatric autoimmune disorders.

Revised Children’s Anxiety and Depression Scale (RCADS) (PDF Document 414 KB)
A 47-item, self-reported questionnaire that evaluates different anxiety and mood disorders, including separation anxiety disorder, social phobia, generalized anxiety disorder, panic disorder, obsessive-compulsive disorder, and major depressive disorder. Questions are rated on a 4-point scale that is summed to give a total anxiety scale and a total internalizing scale. There is also a Revised Child Anxiety and Depression Scale – Parent Version (RCADS-P) for further evaluation of their children.

Short Obsessive-Compulsive Disorder Screener (SOCS)
A 7-item, self-report tool that assesses common symptoms, including checking, touching, cleanliness/washing, repeating, and exactness. There are 2 additional questions that include impairment and resistance. Each question has a 3-point response rated from 0-2. SOCS score is calculated by summing up the total numbers.

Care, Action, & Self-Care Plans

Self-Help: Managing your OCD (anxietycanada.com)
A self-help guide for parents and clinicians to provide different ways to help manage anxiety and OCD.

OCD Self Help (get.gg)
Helps to challenge OCD thoughts, encourages patient’s mindfulness, and introduces exposure and response prevention (ERP).

Self-Directed Treatment for OCD: The Irony of Doing the Opposite
Brief explanation of Exposure Response Prevention and will discuss how patients can utilize ERP for OCD.

Care Processes & Protocols

Obsessive-Compulsive Disorder: Diagnosis and Management (aafp.org)
Provides an algorithm for treatment of OCD as well as recommendations for pharmacotherapy and psychological treatments; American Family Physician.

Practice Guideline for the Treatment of Patients With Obsessive-Compulsive Disorder (psychiatryonline.org)
Practice guideline for treatment of OCD. Includes treatment recommendations, how to implement treatment plan, as well as medications and psychotherapy/cognitive therapies.

Clinical practice guidelines for Obsessive-Compulsive Disorder (nih.gov)
Provides treatment algorithm for OCD. Also includes treatment strategies for possible non-responders to SSRIs.

Clinical Checklists & Visit Tools

Psychiatric Assessment Form (bcmj.org) (PDF Document 18 KB)
A template for an initial psychiatric assessment form. Includes evaluation of OCD.

Mental Health Plan Assessment Form (sbcounty.gov) (PDF Document 522 KB)
A template for providers to use when doing a psychiatric evaluation for patients.

Comprehensive Psychiatric Evaluation for Children (stanfordchildrens.org)
Explains what guardians should expect during a comprehensive psychiatric evaluation for children. This will include interviewing patients and guardians, possible lab tests and imaging, and speech and psychological assessments.

Letters of Medical Necessity

Sample Letter of Medical Necessity (medben.com) (PDF Document 72 KB)
A template for a letter of medical necessity.

Appealing Treatment Denials (psychiatry.org)
Provides a template for a letter to appeal a denial in the event that treatment services are denied by an insurer.

Medication Guides

Clinical Practice Review for OCD (ADAA)
Provides a list of treatment options including medication guidelines and dosing for children and adults; Anxiety and Depression Association of America.

Medication for Pediatric OCD (iocdf.org)
Provides a list of pharmacotherapies and the recommended dosings as well as their side effects

Questionnaires/Diaries/Data Tools

Rituals Diary (getselfhelp.co.uk)
A template where patients can record the daily occurrence of the rituals and lets patients record their discomfort.

OCD Thought Record Sheet (getselfhelp.co.uk)
A template where patients can record their obsessions and compulsions and their thoughts.

Resources for Patients & Families

Information on the Web

OCD in Kids (iocdf.org)
Helps families and children understand OCD and find a local provider who specializes in OCD.

Obsessive-Compulsive Disorder Resource Center (aacap.org)
Family education for disorders that include OCD as well as other anxiety disorders, personality disorders, and mood disorders. Includes facts, videos, and a psychiatrist finder tool; American Academy of Child & Adolescent Psychiatry.

National & Local Support

National Alliance of Mental Illness (NAMI)
A national organization provides information and resources for families and professionals, including a helpline, local chapter resources, and advocacy, links to state chapters, information about conferences, and links to additional resources.

Allies with Families
Provides emotional support, training, and resource information for families of children with emotional, behavioral, and mental health disabilities; also includes workshops for siblings.

Studies/Registries

Understanding How Ketamine Brings About Rapid Improvement in OCD (ClinicalTrials.gov)

Open/Aftercare Treatment for Participants Diagnosed With Obsessive-Compulsive Disorder (ClinicalTrials.gov)

Patient-Specific, Effective, and Rational Functional Connectivity Targeting for DBS in OCD (ClinicalTrials.gov)

Reclaim Deep Brain Stimulation (DBS) Therapy for Obsessive-Compulsive Disorder (ClinicalTrials.gov)

Predicting Treatment Response in Patients With OCD (ClinicalTrials.gov)

Services for Patients & Families Nationwide (NW)

For services not listed above, browse our Services categories or search our database.

* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.

Authors & Reviewers

Initial publication: August 2021; last update/revision: January 2022
Current Authors and Reviewers:
Author: Allison Chang
Senior Author: Mary Steinmann, MD, FAAP, FAPA
Reviewer: Sean Cunningham, Ph.D.
Authoring history
2021: first version: Allison ChangA; Mary Steinmann, MD, FAAP, FAPASA
AAuthor; CAContributing Author; SASenior Author; RReviewer

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