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When McLean Hospital’s residential treatment program for obsessive compulsive disorder (OCD) was launched in February 1997, there was a general lack of understanding about the illness and a significant lack of effective treatment. However, over the past twenty-plus years, great progress has been made in both treating and learning about OCD. McLean’s Obsessive Compulsive Disorder Institute (OCDI) has become a model for the development of other OCD treatment programs across the country.
During the early 1990s, there wasn’t a good understanding of how many people were actually struggling with OCD. We didn’t realize how ineffective the traditional therapy interventions were at that time. In fact, OCD treatments back then could even make patients’ conditions worse, not better.
Fortunately, since that time, the understanding and treatment of OCD has improved significantly. The OCDI has helped to lead that improvement through a collaborative model, including cooperation among clinicians, researchers, and patients and their families.
When the OCDI opened, we knew we needed to collect data on the experiences our patients were having. Our primary mission is to help people get better, and the only way to optimize that is to collect information.
In the early days, research happened on the back end, separate from the clinical work. We felt that integrating treatment and research would be more effective, and the result has been amazing. Our researchers and clinicians work hand-in-hand, seamlessly, to answer important questions.
In the past, data was collected with paper and pencil and manually entered into a database. More recently, we have been collecting data through a secure online system specifically designed for medical research. This has enabled our OCDI researchers to vastly improve the speed, volume, and precision of data collection, giving us a movie version of what’s happening.
This technological improvement has led to a corresponding acceleration in research and clinical care, including our recent successes with promoting inhibitory learning by modifying traditional exposure and response prevention (ERP) therapy approaches.
The exposure refers to opening up yourself to the thoughts, images, objects, and situations that make you anxious and/or start your obsessions. Response prevention refers to making a choice not to do a compulsive behavior once the anxiety or obsessions have been “triggered.” ERP therapy is done under the guidance of a therapist at the beginning—though individuals are taught to do their own ERP exercises to help manage OCD symptoms.
There’s a fear structure in your brain, a network of learning, that has learned how to be afraid of certain stimuli. What we’re trying to do in exposure therapy at McLean is create opportunities for new learning that will then stop some of those circuits.
One approach has been to vary the contexts of exposures—such as performing exposures in different settings—to reinforce the concept that a fear is unfounded. Another approach is to expose a patient to multiple fear triggers, rather than just one.
When we perform these exposures, it feels awful and scary to the patient, but the actual event is not so catastrophic. That discrepancy is called a ‘violation of expectancy,’ which helps create inhibitory learning.
Another target of current and future research is to revolutionize OCD care by individualizing treatment. Most of what we’ve learned about OCD has come from studying a lot of people and averaging all their results. Now we can develop a single comprehensive record about a single person’s OCD experience—without too much effort—enabling us to model their OCD.
One of our other major goals is to figure out how to help the approximately 15% of patients with OCD who still don’t respond well to treatment. Researchers and clinicians here have been trying to pinpoint differences between this group and the 85% that do respond well to treatment. Such discoveries could, in turn, suggest treatment modifications for patients who haven’t benefited from standard approaches.
Getting family members more involved in treatment was one of earliest goals at the OCDI. With OCD, more than with most other mental health disorders, the families are often very involved in the symptoms.
Family members are often asked by the patient to do things a certain way, and when they comply, they become accommodators of the symptoms. In terms of relapse prevention, we realized that if we weren’t educating and supporting the family simultaneously, we were setting up those patients to fail at home.
The OCDI has been such a success and based on statistics that show that many people develop OCD in childhood, we launched an OCD program for children and adolescents.
From the day it opened, OCDI Jr. has been operating at full capacity and providing treatment to kids and teens from as far away as Mexico, Zurich, and Montreal. We have an extensive waiting list, and the need for our kind of services is huge.
In the United States, 1-2% of children and teens live with OCD. There aren’t many OCD programs available that are focused on youth. We are really looking forward to a time when we can grow our program to have more beds to serve more kids.
We would like to think that we are close to a cure, but right now we are more focused on enhancing methods for symptom reduction and exploring means of prevention. If we could identify predictors to developing OCD and intervene before a person develops symptoms, rather than just treating people after they get sick, that would be ideal.
We are passionate about helping each and every patient that comes here, but ultimately, we want our impact to be much broader, on the field itself.
Diane Davey, RN, MBA, is the program director and co-founder of the Obsessive Compulsive Disorder Institute (OCDI) at McLean Hospital. The OCDI has been a leader in OCD care and research for over 20 years.