Project Summary
This project is ongoing and does not have results.
The Patient-Centered Outcomes Research Institute (PCORI) is partnering with the Agency for Healthcare Research and Quality (AHRQ) to develop a systematic evidence review on Diagnosis and Treatment of Obsessive-Compulsive Disorder in Children and Adolescents. The American Academy of Child and Adolescent Psychiatry (AACAP) plans to use the findings of this systematic evidence review to develop related clinical guidelines.
Background
Obsessive-Compulsive Disorder (OCD) is typically a chronically debilitating disorder characterized by recurrent intense obsessions and/or compulsions that cause severe distress and interfere with day-to-day functioning. Obsessions are repetitive and persistent thoughts, impulses, or images that are unwanted and cause marked anxiety or distress. Frequently, they are unrealistic or irrational. A person suffering from OCD may attempt to ignore, avoid, or suppress obsessions, or may try to neutralize them with another thought or action (e.g., performing a compulsion). Compulsions are repetitive behaviors, rituals (like hand washing, keeping things in order, checking something over and over) or mental acts (like counting or repeating words silently) that may be performed in response to an obsession or according to rules that may be applied rigidly. In OCD, the obsessions and/or compulsions cause significant anxiety or distress, and may interfere with the child's normal routine, academic functioning, social activities, and relationships.
OCD affects more than three million people in the United States and is seen in as many as one-three percent of children and adolescents. Research suggests that approximately fifty percent of all cases have their onset in childhood and adolescence, with more than half of pediatric patients found to have at least one comorbid psychiatric disorder. Although OCD generally presents similarly in children and adults, pediatric OCD appears to be more common in males than in females, in contrast to adulthood, where the male-female ratio is approximately 1:1. In addition, boys typically have an earlier age of onset (7 to 9 years) than girls (11 to 13 years).
Repetitive, ritualistic behaviors can be a part of normal child development and, therefore, diagnosing OCD can be difficult in children. Additionally, children with OCD may display compulsions and rituals (e.g. blinking and breathing rituals) different than those typical in adults (e.g., washing or checking). Further, while compulsions are usually observable, obsessions are frequently hidden or poorly articulated, especially in younger children, who may be unable to describe obsessive thoughts or the reasons for their compulsive actions. Most children exhibit multiple obsessions and compulsions.
In the absence of adequate treatment, OCD is generally a serious and disabling disorder with a chronic but fluctuating trajectory. Symptoms may repeatedly improve but then worsen again. Recommended treatment for OCD in children and adolescents includes pharmacological and nonpharmacological therapy options. Treatment options include cognitive behavioral therapy (CBT), multimodal treatment, and pharmacological treatment such as selective serotonin reuptake inhibitors (SSRIs). Medication augmentation strategies may also be considered most utilizing atypical neuroleptics.
Current guidance from U.S. societies on the diagnosis and treatment of obsessive-compulsive disorder in children and adolescents is dated. The most recent U.S.-based clinical guidance comes from a Practice Parameter published in 2012 by the American Academy of Child and Adolescent Psychiatry (AACAP). A significant amount of research has accumulated since this publication. Further, in addition to an updated comprehensive assessment of pharmacological and non-pharmacological treatments for OCD in children and adolescents, there is also a need to review the research on complementary and integrative treatments, including biological/biomedical and naturopathic therapies, and alternative care settings and intensities, such as residential care, partial hospitalization and intensive outpatient interventions. Consequently, a review that synthesizes the totality of the current evidence available on the benefits and harms of diagnosis and treatment of OCD in children and adolescents is needed to support the development of a clinical practice guideline and to inform decision-making for healthcare professionals, clinicians, patients, and caregivers.
Proposed Key Questions (KQs)
1. What is the comparative diagnostic accuracy of approaches that can be used to diagnose obsessive compulsive disorder (OCD) in children and adolescents?
1a. Once a diagnosis of OCD has been established, is there evidence of usefulness of assessment of PANS/PANDAS when symptoms occur pre-pubertally and abruptly?
2. What are the comparative effectiveness and harms of psychological, pharmacological, and neuromodulation interventions, including in-person and telehealth strategies, when used alone or in combination for treatment of OCD in children and adolescents?
3. What are the comparative effectiveness and harms of complementary/integrative treatments, such as naturopathic therapies (i.e., N-acetylcysteine, GABA and SAM-E naturopathic supplements), and mind-body practices (i.e. mindfulness meditation and yoga) for treatment of OCD in children and adolescents?
4. What are the comparative effectiveness and harms of the different care settings and care intensities, such as residential care, partial hospitalization, intensive outpatient, and outpatient treatment used when treating OCD in children and youth?
For all key questions, how do findings vary by disease severity and/or duration, comorbidities, and patient characteristics (i.e. gender, race, socioeconomic status, etc.)?