Popular ideas about obsessive-compulsive disorder (OCD) are often reduced to stereotypes, such as excessive handwashing or neatness. But this treatable condition can also involve unreported symptoms that include intrusive fears of harming others or unwanted sexual or religious thoughts. Stigma and misunderstanding lead some individuals to conceal these symptoms from their doctors and family. An international review reveals that these misconceptions about symptoms often delay or block access to proper OCD treatment.

“OCD is frequently diagnosed late or treated inadequately, although effective therapies are available,” said Adam Frank, MD, PhD, lead author and Assistant Professor of Clinical Psychiatry and the Behavioral Sciences at the Keck School of Medicine of USC. The scoping review of past research, which is a research method to map existing evidence before engaging in further review, was supported by the Southern California Clinical and Translational Science Institute (SC CTSI) and appeared in the Journal of Obsessive-Compulsive and Related Disorders.

“The delays in help are driven by a mix of stigma, a misunderstanding of symptoms, and gaps in health care systems that make specialized treatment hard to access,” Frank added.

The review originated during Frank’s participation in the three-year KL2 Mentored Career Development award, supported by SC CTSI. With the award, Frank and his team were able to protect research time and focus on designing, conducting and analyzing the clinical review. OCD affects about two percent of people over their lifetimes and can severely disrupt daily life – interfering with work, school and relationships. However, the authors note that evidence-based treatments can reduce symptoms.

Examples of treatments include exposure and response prevention (ERP) therapy, which is often combined with medication. Together, these treatments have proven effective. ERP is a therapist-guided process that helps people confront thoughts and situations that bring on anxiety and obsessions. Over time, they “retrain” their thoughts to respond more calmly. The problem is that many people never receive ERP treatment or only receive it after years of suffering.

Another issue is that patients, families, and health care providers often fail to recognize potential OCD, particularly when symptoms don’t match common stereotypes. Intrusive fears about harming others, sexual thoughts or religious obsessions can be embarrassing for people to disclose.

“Individuals with OCD can have difficulty recognizing the difference between a thought and a real occurrence in the world,” said Frank. “They have thoughts that come up that they focus on, causing real distress.”

People with OCD may fear being judged if they talk about their symptoms or seek psychiatric care. They often don’t realize their symptoms are part of a treatable disorder or don’t know where to turn for help. Their families may also worry about stigma.

Family beliefs can impair or promote effective care. Loved ones often try to reduce the distress of OCD sufferers by helping them avoid situations they fear. But “accommodation” of fears can unintentionally reinforce OCD and make treatment less effective. When families are educated about ERP and aligned with treatment goals, they can instead become a critical source of support.

“A large factor in treatment outcomes for OCD is involvement by family,” Frank added.

The scoping review also addresses systemic issues in health care. Many ERP-trained therapists work in private practice and do not accept insurance, primarily because of low reimbursement rates. As a result, people who recognize they need help may not be able to afford it.

“There are often differences in coverage rates for mental health care versus physical health care,” said Frank. “Addressing that could go a long way towards improving access to and outcomes from treatment.”

Health systems should expand ERP training and availability and better prepare primary care providers, who are often the first point of contact.

“There needs to be more training for frontline clinicians to recognize the disorder and greater availability of evidence-based treatments,” Frank said.

Drawing on findings from countries around the world, the researchers identified global patterns, gaps and opportunities for improvement. The team screened about 4400 studies, reviewed the full text of 186 studies and ultimately extracted data from 51 studies.

“A scoping review like this allows you to look at different studies of different designs across a broad range of potential outcome measures and topics, and integrate them,” said Frank.

In addition to issues with identifying OCD and the stigma associated with it, structural barriers can also prevent treatment.

“Delays in people getting care are too long, as are delays in having that care be sufficiently helpful,” said Kaeo Wongbusarakum, B.S. The study’s first author is a 2024 graduate of USC and former research assistant in the Frank Lab at the Keck School of Medicine at USC. The importance of access to affordable care was a consistent theme of the review. This, combined with better awareness of OCD, less stigma, and stronger family support, could help people get treatment sooner and avoid years of unnecessary suffering.