Obsessive-compulsive disorder (OCD) is characterized by uncontrolled, unwanted thoughts (obsessions) and repetitive behaviors or rituals (compulsions) that can adversely impact an individual’s ability to function every day.
OCD can be particularly impairing for children and adolescents. Young people who do not receive adequate treatment for OCD face numerous life challenges and are more likely to have symptoms persist through adulthood.
Recognizing the unique and complex needs of OCD patients, McLean Hospital opened its OCD Institute (OCDI) in 1997—the first residential treatment program for the condition in the United States. OCDI Jr., a residential program that treats children and adolescents under 18 years of age, opened on the Belmont campus in 2020.
In addition to providing individually tailored treatments for patients, OCDI Jr. is also a hub of research.
In a study published recently in Children, OCDI Jr. clinician-researchers at OCD took a closer look at their patient population to uncover trends that could inform and improve care for young OCD patients.
Maria G Fraire, PhD, program director of OCDI Jr., explains more about this study and how it can spur more awareness and future research.
Q: What prompted this research?
As a residential treatment program that serves youth experiencing significant OCD and anxiety, our clinical research seeks to better understand the types of patients who seek our services and how they respond to our treatments.
Our first paper to come out of this research effort, spearheaded by Alyssa Faro, PhD, looked at the clinical complexity of young patients in the program.
Our program is one of the few insurance-based OCD-focused residential programs in the country, and we wanted an in-depth exploration of our patients to better help other families, outpatient mental health providers and insurance companies understand who might benefit from a residential treatment program such as ours.
Q: What are some knowledge gaps around residential treatment for obsessive compulsive disorder in children and adolescents?
Our program is first and foremost a treatment program and is entirely voluntarily, specifically designed for youth who are willing to engage in treatment.
We use evidence-based treatments specifically for OCD and anxiety (i.e. Exposure and Response Prevention, a cognitive-behavioral treatment).
The residential treatment model offers 24/7 support, uniquely designed to target rituals that are impacting patients’ everyday lives. We teach our patients skills to get back into their everyday lives in spite of OCD.
One of the biggest misconceptions about residential treatment is that it is the same as an inpatient hospitalization. This misconception has led families to seek our services during times of acute crisis, when inpatient stabilization is necessary instead.
Unfortunately, it has also led outpatient providers to refrain from recommending our services until the crisis is so high that patients are typically unwilling to engage in voluntary treatment.
Insurance companies can also deny coverage for these services because we are held to inpatient acuity safety criteria and our patients aren’t seen as “acute enough.”
The hope embedded in our research is that by increasing the understanding of youth experiencing significant OCD—particularly those that benefit from more intensive levels of care—more families will have a smoother path to accessing the care they need.
Q: What did your research find?
Our study revealed that youth seeking our services experienced an average of four different subtypes of OCD, with the most common being OCD known as “not just right experiences,” where the ritual is to do something until it “feels right” and isn’t tied to a specific number or pattern.
Notably, the depression levels reported in our OCD patient sample were equivalent to those experiencing depression in inpatient programs, with worse overall general functioning with school, family and other social relationships comparatively.
In addition, we found high levels of ADHD symptoms among our patients with OCD, with a mix of those coming in with a previous diagnosis, as well as those with undiagnosed ADHD.
In regard to prior treatment, more than 95% of our patients had sought outpatient treatment first, and almost 60% had previously tried other intensive outpatient, partial hospitalizations, inpatient, or other residential programs prior to coming to us. This finding in particular underscores the need for an OCD-specific residential treatment.
The overall takeaway from this study is just how many challenges the families seeking our services are experiencing.
OCD itself is complex, and the youth we work with are also experiencing comorbid diagnoses, struggling in school, causing significant family stress, and experiencing difficulties in their social relationships.
Q: How can the knowledge gaps addressed by this study propel future research?
This initial paper is a steppingstone for our overall research.
It has allowed us to reinforce our clinical perceptions with concrete data, highlighting the complexity of youth experiencing significant OCD and the need to evaluate the impact of multiple comorbidities on our patients.
That has informed our second study, which is now underway. We are evaluating treatment outcomes within our program, and specifically analyzing the role that tolerating uncertainty and building emotion regulation skills play in OCD treatment.
Our treatment outcomes are not only conceptualized as a reduction in symptoms, but also improved quality of life and treatment satisfaction.
All of our research is done in tandem with the routine clinical measures we collect to evaluate ongoing treatment response throughout the course of treatment.
This process allows us to demonstrate to patients and families in real time how they are responding to treatment, and our research projects can help us share insights with the community more broadly.
We truly integrate our clinical care and research practices. Only through clinicians, researchers and patients and families working together will we move the needle on enhancing treatment outcomes for youth with OCD.
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