The OCD Treatment Gap

The WHO lists Obsessive-compulsive disorder (OCD) as one of the top ten most disabling conditions. In the US, about 8.2 million adults and a little over 736,000 children and teens are estimated to have OCD. For adults, that is 1 in 40 and for children and teens, that is 1 in 100. In the past, this disorder was considered a lifelong impairment with virtually no avenues for relief. However, this changed with the advent of effective medications and cognitive-behavioral approaches. Today, OCD is considered highly treatable and many people learn to manage it and live rewarding lives. So that means everyone with OCD is getting effective treatment right? Right?

The WHO estimates that only 30-40% of people with OCD seek treatment for it. Only 30-40% of individuals with OCD seek psychiatric treatment. In other studies, the proportion of treatment seekers increases to 56% for those with OCD and a comorbid condition. But for those with OCD alone, the same study found that the proportion of treatment seekers drops to only 14%. This definition of treatment included any psychiatric treatment and/or any psychotherapeutic treatment targeting OCD. Less than 10% of individuals in this study saw a psychiatrist in the previous year and only 5% of these individuals with OCD received cognitive behavioral therapy. Research from Australia suggests that individuals from OCD have symptoms for over 9 years before receiving treatment.

We are as able to treat OCD as we have ever been, and yet this gap remains. Why is it there? And what can we do to close it?

The medications currently available for OCD (i.e., serotonin reuptake inhibitors) are largely effective for adults, but even with this therapeutic effect, adults still experience residual symptoms – and impairment – of OCD along with high relapse rates. Medications thus far are less effective for children with OCD, leaving them with fewer pharmaceutical options.

While cognitive behavioral therapy, particularly exposure with response prevention, shows larger improvements for patients in clinical trials as well as lower relapse rates, about a quarter of patients drop out of this type of treatment. Additionally, completing a comprehensive course of CBT for OCD plus any comorbidities that must be managed along the way tends to be more expensive and time consuming than regularly taking a medication. 

Furthermore, reluctance to speak to a professional and stigma continue to discourage individuals with OCD from seeking treatment. A lack of knowledge about what OCD looks like can also delay treatment, both on the part of individuals with OCD and providers who are unable to accurately diagnose it without contributing to the delay in treatment. For children, compulsions often involve family members. Treatments that do not involve parents or other family members may be less effective at addressing these presentations.

Based on this small review of the OCD treatment landscape, it seems there is a need for providers to work together to connect individuals with OCD to appropriate help. The situation calls for qualified therapists to provide not only in exposure with response prevention, but other evidence based treatments shown to improve OCD like Inference-based CBT, Acceptance and Commitment Therapy, mindfulness, group CBT and family-based treatments for children in order to better serve those who do not find exposure with response prevention acceptable and for those who experience residual symptoms. It requires therapists, neuropsychologists, and medical professionals to accurately identify OCD. And for therapists, neuropsychologists, and medical professionals to work together to connect people with OCD with the highest level of care.  

While working together to provide a wide array of the most current treatment options is only one way we can tackle the treatment gap, and one that doesn’t address larger social and systemic factors preventing people from getting the help they need, it is a strategy we are uniquely equipped to implement. We can fill gaps that randomized control trials can’t fill, like community and connection. Every therapist, neuropsychologist, medical professional, and community member can close this gap a little more by bringing each of our pieces of treatment and support a little closer together through collaboration. Our door is always open, we are always willing to do what we can to close the gap.