J. T. Fuller | May 3, 2022
Childhood obsessive-compulsive disorder (OCD) is a debilitating and enduring condition with unknown cause. There are many potential risk factors to the development, maintenance and severity of the condition, including trauma and internalized shame and/or anxiety. OCD is often comorbid with other mental health conditions, which increases treatment complexity. There are opportunities to decrease the likelihood of pediatric OCD development at school and through gamified therapy, as well as opportunities to decrease the severity of the condition through streamlined access to evidence-based treatments and parental support.
Obsessive-compulsive disorder (OCD) in children includes obsessions, compulsions, or both, that are time consuming or result in clinically significant distress or dysfunction (Cervin et al., 2022, American Psychiatric Association, 2013). OCD symptoms (OCS) include aggression, checking behaviors, collecting, compulsive hand washing, counting and ordering rituals, hoarding, magical thinking or rituals involving other people, obsessions about contamination, repeating, sexual concerns, somatic concerns, superstitious beliefs and religious concerns (Voltas Moreso, Hernández-Martínez, Arija Val, & Canals Sans, 2013). OCD is treatment resistant and considered an enduring disorder that does not resolve without intervention (Hollmann et al., 2021). This review evaluates current literature on pediatric OCD and proposes evidence based strategies at the primary, secondary, and tertiary levels, including school programming interventions, game-based therapy, parenting training, and increased access to effective treatments.
OCD is a chronic treatment resistant disorder often resulting in lower SES and is a risk factor for developing additional disorders into adulthood (Hollmann et al., 2021). Several disorders are commonly found with OCD, including depression, generalized anxiety disorder, attention deficit hyperactivity disorder (ADHD) and bipolar disorder (Osland, Arnold, & Pringsheim, 2018). OCD is considered treatment resistant because of low remission rates (Marsden et al., 2016). OCD is a common disorder affecting 1.5-2.5% of the population, onset peaks around age 11 and again around late adolescence/early adulthood (Bernardes et al., 2020). Pediatric OCD and anxiety are closely related and often comorbid (de Nadi et al., 2022). These conditions typically result in significant impairment, including challenges with quality of life, school, family and social relationships that persist into adulthood as OCD, anxiety and/or depression.
Anxiety disorders, including OCD, have an annual economic cost of $63 billion in the United States. There are several effective treatments for pediatric anxiety and OCD, but the “gold standard” of treatment (cognitive behavioral therapy (CBT) combined with an antidepressant) is not routinely made available to all children in need. Treatments like deep brain stimulation are expensive and do not show as much of an improvement as other options, but this treatment is helpful for the most severe cases and is appropriate nonetheless because the improvements for those individuals will be significant for them and reduce overall resource utilization (de Nadi et al., 2022).
Many factors related to OCD’s onset, duration and severity have been evaluated in the literature. These factors span across the biopsychosocial landscape to inform potential areas of interest for prevention and treatment. Many of these factors are interdependent and OCD is an equifinal disorder, meaning there are many different ways this condition develops.
OCD has a strong genetic component, and the most reliable indicator of risk is having a first-degree relative with OCD (Brander, Pérez-Vigil, Larsson, & Mataix-Cols, 2016). Numerous studies have found having a first-degree relative with OCD is a risk factor for developing OCD (Bernardes et al., 2020). The sibling of a child with early-onset OCD has a significantly higher risk of also developing OCD (Negreiros et al., 2020). Research on cognitive domains has revealed significant relationships between spatial working memory deficits and OCD in adults and in high risk pediatric samples as compared to a control group (Bernardes et al., 2020).
Researchers have found a relationship between childhood OCD and being male, adverse prenatal, perinatal and/or postnatal experiences, difficult temperament in early childhood and lower socioeconomic status (SES) (Fullana et al., 2019). Researchers have found significantly higher rates of adverse childhood experiences in people with OCD as compared to the general population, with the majority having experienced maltreatment in some form before age 16 (Osland et al., 2018). In adults, as relevant to children, the experienced parenting style has been found to be both a risk and protective factor with paternal warmth being protective, but paternal interference, overprotectiveness, punitiveness, or refusal being risk factors (Fullana et al., 2019). Everyday racial discrimination has been associated with higher rates of OCD diagnosis and higher intensity (Williams et al., 2017). However, several researchers have found no relationship between SES and OCD, suggesting socio-cultural factors may not relate to OCD (Fullana et al., 2019).
There are several psychological risk factors related to pediatric OCD. The literature suggests both feelings of anxiety and shame are independent predictors of OCD severity (Weingarden, Renshaw, Wilhelm, Tangney & DiMauro, 2016). Researchers have identified a significant association between levels of shame and severe adverse outcomes including both suicide risk and functional impairment (Weingarden et al., 2016). Researchers have connected death anxiety with many maladaptive behaviors including OCD, and death anxiety is highly correlated with severity of OCD (Verin, Menzies & Menzies, 2022). Cultural worldviews and self-esteem established in childhood are protective of death anxiety (Verin et al., 2022). Attachment style is suggested to be protective of death anxiety, but researchers have yet to conclusively establish whether secure attachment moderates OCD severity (Verin et al., 2022). Other risk factors include having ADHD and early childhood separation anxiety (Fullana et al., 2019).
Interventions for OCD are primarily therapy and pharmacologically based, but these interventions are only somewhat effective. CBT is the recommended first-line treatment for OCS (Hardy & Walkup, 2021). CBT has been found to be the most efficacious treatment method for OCS across the literature, but researchers have found only a 40% remission rate for pediatric OCD after a full course of treatment. (Kemp, Barker, Benito, Herren, & Freeman, 2020). Exposure with response prevention (E/RP) is beneficial to incorporate for triggering situations, but is often not included because of impracticality (Hollmann et al., 2021). When CBT is unavailable or is ineffective due to an inability to fully engage in CBT, guidelines for pediatric treatment include first Selective serotonin reuptake inhibitors (SSRIs), and serotonin reuptake inhibitor (SRI) as a second line treatment (Hardy & Walkup, 2021). However, medication alone has been shown to be inadequate to eliminate OCS in various studies.
Other interventions include parent training, family CBT and eye movement desensitization and reprocessing (EMDR). One promising parent-based intervention, Supportive Parenting for Anxious Childhood Emotions (SPACE), resulted in improvements for both the child’s OCS and the family atmosphere by teaching parental response modification (Dekel et al., 2021). While most parent training typically focuses on teaching parents to provide CBT-like interventions at home, parental response modification is particularly useful for children resistant to direct interventions (Dekel et al., 2021). EMDR has been studied extensively in the context of pediatric post-traumatic stress disorder (PTSD); studies for pediatric OCD are promising but limited (Mavranezouli et al., 2020; Cusimano, 2018). In a study of adults with OCD, researchers found EMDR outcomes comparable to CBT (Marsden et al., 2016).
Available treatments (psychotherapy and pharmacology based) help 60-70% of patients, but treatment resistance is common (Bernardes et al., 2020). African American adults with OCD are less likely to experience remission or effective care (Williams et al., 2017). Untreated OCD is persistent and OCD is expected to be a chronic problem (Bernardes et al., 2020). The most efficacious treatment for pediatric OCD is CBT, but remission rates are low at only 40% after a full course of treatment (Kemp et al., 2020). Other researchers have suggested the remission rate is between 28 and 60% (Peris et al., 2020). Non-white youth tend to have a lower rate of remission with CBT; across disorders, CBT is not as efficacious for non-white youth (Peris et al., 2020). Family factors have been found relevant to predicting whether CBT is likely to be an effective course of treatment (Peris et al., 2020). Family history of OCD and family accommodation of symptoms/dysfunction both predict reduced effectiveness of CBT in some studies (Peris et al., 2020). The presence of a first-degree relative with OCD significantly decreases the likelihood that CBT will be effective without pharmacological support. Non-white youth with a poorly functioning family have better outcomes when individual CBT is combined with family CBT (Peris et al., 2020).
Access to effective treatment is limited by mental health support resources and long wait lists are typical (Dekel et al., 2021). Rural areas are particularly limited in access to qualified professionals (Hollmann et al., 2021). Although E/RP is a valuable tool for resolving triggers, it is often impractical to implement. Mental health care stigma is a barrier to access.
Although many areas related to OCD have been studied, treatments for OCD are limited in availability, accessibility and effectiveness. Accordingly, prevention of OCD is the primary focus of this intervention strategy, and increased effective and timely access to evidence-based interventions for high-risk children is a secondary goal. The third tier provides for more intensive intervention and treatment. The strategy is largely focused on the family and school domains, with tangential implication of media, peers and community. The family and school domains provide the greatest opportunity for effective intervention and prevention; OCD is less influenced by media, peers or community as compared to home and school domains. While an ideal solution would be enmeshed in all areas, it is unrealistic to expect meaningful useful interventions for OCD at those levels as compared to the potential for support in school and with family.
The goal of this level is to decrease environmental and psychological factors related to onset, maintenance and severity of OCD. Feelings of anxiety and/or shame are foundational to the development and maintenance of OCD, so interventions are designed to decrease the risk of exposure to potential triggers for anxiety and shame and increase protective factors for all children. Trauma is more common for those with OCD, and trauma is associated with a higher risk of many health issues so interventions are designed to reduce the likelihood of trauma, improve resilience to environmental stressors and increase peer support.
This initiative is targeted at schools, and includes both a robust anti-bullying program and a trauma-informed evidence-based social emotional learning (SEL) curriculum to be implemented for students from kindergarten through grade 12. Programming should be adjusted to address the specific needs of each grade, campus, and district, and should be integrated as far as possible, ideally at the state level, or at the district level and between educational programs to avoid iatrogenic risks (Ansary et al., 2015). Programming for students should be progressive and age-appropriate, and professional development for all staff should include trauma-informed training with specific attention to avoiding triggering shame and anxiety. This ongoing school-based intervention will continue to increase in sophistication as students mature, and should include all staff, particularly administration and leadership, embodying and demonstrating the skills students are developing.
Although this is primarily a school-based intervention, it is also directly applicable to peers and extends to the family and community. Media support for this effort would include guidance for parents to apply students’ SEL and anti-bullying skills to analyzing media contents and identifying maladaptive patterns in the media, and anti-bullying advertising. Focus on SEL and anti-bullying is protective of vulnerable children, and teaches peers to interact with each other in a healthy way, which provides additional potential for support. Adults modeling healthy interactions may be the first time some children observe conflict resolved effectively, and it is essential for adults to interact with children in a way specifically designed to be anti-traumatic and sensitive to trauma. Increased sensitivity to inappropriate consequences (for example, taking away recess for any reason) and sensitivity to anxiety are important to ensure these conditions are not festering unnecessarily. The programs should be systematically evaluated by identifying the school’s strengths and needs, and considering multiple sources of information collected in multiple ways (Ansary et al., 2015) and will be reassessed on an annual basis.
The goal of this intervention tier is to improve access to safe and effective treatment for at-risk children with barriers to access minimized as much as possible. Mental health support resources are limited and unequally distributed, so this intervention is primarily self-administered therapeutic interventions including both CBT and EMDR. Both CBT and EMDR are evidence-based treatments for OCD, and there is evidence self-administered treatments are effective and can be done safely (Waterman & Cooper, 2020). The format would be a gamified phone and web-based application developed with evidence-based best practices. The game would be introduced to students in school, with school encouraged use for at-risk students, and promoted through the media and in the community to parents. Since all students would be instructed in school how to use the game, there is tangential peer support, but that is not the primary focus of this intervention. Including peer interaction functionality in the game has a high risk of bullying, which would be counterproductive and undesirable. This program would be available for use as desired, with no set duration, but would increase in complexity and sophistication as skill mastery is achieved. Users would rate the severity of their symptoms at the beginning and end of each session, which will be used to evaluate the efficacy of the program.
Addressing the family domain, also at this level is parent training for parents with OCD, parents with any child with OCD, or parents of otherwise at-risk children. Ideally this program would be targeted at fathers as they have more potential to be a risk or protective factor in the child’s life. The focus here is ensuring the parent receives specialized training for managing shame and anxiety in children as early as possible. The program would be modeled after the SPACE program for parents of anxious children, to teach modified parental responses (Dekel et al., 2021). The program duration is 10 to 12 weeks. Effectiveness is measured based on parent satisfaction surveys and parent ratings of child behavioral changes before and after training.
The goal of this tier is to provide active and ongoing intervention to a child with suspected OCD. Once OCD is diagnosed, robust support is necessary as soon as possible for the best possible outcome because OCD is not a condition that tends to resolve with time. This includes in-person or remote administered CBT and/or EMDR by a licensed professional. One option is iCBT, a remotely delivered option for access to CBT, and is as effective as in-person CBT (Hollmann et al., 2021). In addition, the likelihood of need for pharmacological support should be assessed at diagnosis based on family history of a close relative with OCD. Minority families would likely benefit from joint CBT therapy (Peris et al., 2020). Typical courses of therapeutic treatment are 16 to 20 weeks, with multiple courses of treatment required. Treatment effectiveness is evaluated based on the Children’s Yale-Brown Obsessive–Compulsive Scale (CY-BOCS; Scahill et al., 1997) and the course of treatment is to be determined individually by the care provider. Effectiveness is assessed at completion of each 16-20 week treatment period.
This review has several important limitations. The cause and risk factors for OCD are not fully understood. With many common comorbidities, the complexity of the condition makes it particularly difficult to prevent and treat. Internalized disorders like OCD are more difficult for others to recognize, which makes early intervention even more challenging. Further, most of the literature is focused on adult OCD and not pediatric OCD, and novel treatments tend to be developed for other disorders and then applied to OCD with less vigorous evaluation.
The feasibility, safety and efficacy of self-administered treatments and gamified therapy needs further evaluation. Studies on effective parenting interventions for fathers of at-risk children would be beneficial. There are many SEL curriculums available, research on effectiveness would contribute to developing high quality programming. Research on culture and the development and maintenance of pediatric OCD would better support interventions for all children.
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