Determining the right treatment: Rogers researchers investigate little-studied ‘not just right’ OCD

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Breaking new ground with research into a relatively unexplored form of obsessive-compulsive disorder (OCD), Rogers investigators are studying a subtype known as “incompleteness” or “not just right” OCD.

Incompleteness results in motivation to perform compulsions to counteract “not just right” experiences in an attempt to feel inner completeness. For example, if a person with OCD compulsively washes their hands, not out of a fear of germs, but to achieve a “just right” feeling, that may indicate the “not just right” subtype.

“People will report that it’s not that they’re afraid; it’s that they feel incomplete,” explains Dr. Rachel Schwartz, PhD. “They have to keep washing their hands until it feels just right. Maybe it’s a certain texture or temperature and some internal signal they’re going after.”

That sense of incompleteness can come with any number of tasks, from washing hands to arranging items, with compulsions to address the feeling sometimes lasting for minutes to hours. Dr. Schwartz gives the example of that feeling of incompleteness in the video below.

“And for those who have OCD, that feeling is just dialed all the way up,” she adds. “We might have been feeling it at a one or a two out of 10 when hearing the incomplete song, but imagine that feeling at 10. It’s completely unignorable. The urge is extremely intense, and unfortunately doesn’t go away as simply as completing a melody.”

While effective treatments exist, up to half of OCD patients don’t respond to first-line therapies and medications.

“In the field, we haven’t been great at predicting who exactly isn’t getting better, and not for lack of trying,” Dr. Schwartz says. “So that leaves us really scratching our heads. There's been a push more recently to start thinking about whether it’s the way we’re thinking about OCD and trying to classify varied OCD symptoms into subtypes.”

Why doesn’t treatment work for some? Shifting the focus from the ‘what’ to the ‘why’

Past studies suggest incompleteness OCD may be associated with poorer treatment outcomes, but there has been little research examining the question, especially in more intensive treatment settings and with children. A study being conducted through Rogers Research Center aims to add to the limited literature on the underrecognized subtype and lead advancements in developing or tailoring treatments.

“When we look at the ‘what’ and those kinds of subtypes, there doesn't seem to be a clear, consistent relationship to treatment outcome,” Dr. Schwartz says.” So that has people wondering, maybe we're looking at the wrong thing. Maybe it's not the ‘what’ that matters. Maybe it's the ‘why.”'

Take the hand washing example: Neglecting the reason why a patient with OCD compulsively washes their hands – may it be to prevent illness or find completeness – could overlook the very information that might predict how well that person will respond to treatment.

“Incompleteness OCD is not fear-driven; it’s discomfort-driven,” explains Dr. Martin Franklin, PhD, clinical director of Rogers Research Center’s Philadelphia extension. “We already know that discomfort doesn’t come down the same way that fear does.”

He says that can perhaps help explain why typical treatment, such as exposure and response prevention (ERP), may have different outcomes in patients whose OCD is fear-based vs. discomfort-based. Before coming to conclusions, researchers say they need to examine the data.

Dr. Schwartz, who joined Rogers Research Center’s Philadelphia extension in 2023 as an associate research psychologist, is leading the retrospective investigation into the “not just right” OCD presentation.

She and other investigators are analyzing data from more than 11,000 child and adult patients enrolled in Rogers’ OCD and Anxiety programs to explore whether different levels of “not just right” OCD are associated with better or worse treatment outcomes. Researchers say the large amount of data can help bring about new insights that can eventually be used to improve treatment.

“If we see that the traditional OCD treatment isn’t working for those with non-just-right symptoms, the next question is, what do we do about it? What can we do to make more targeted interventions to optimize their outcomes?” Dr. Schwartz says. “The retrospective work we’re doing right now is really to set the stage for more prospective research that could start tackling those sorts of questions.”

This will be the first study conducted with children who have OCD in the context of an intensive treatment setting.

The team will also use the data to try to improve the assessment of such symptoms in Rogers’ pediatric OCD programs.

“We’re trying to lay the foundation,” Dr. Schwartz says. “That’s going to set us up to do a lot more exciting work moving forward.”