Jon Grant, MD, JD, MPH, a professor of psychiatry and behavioral neuroscience at the University of Chicago and expert in severe and complex cases of obsessive compulsive disorder, discusses evidence-based approaches to this little-understood disease.
In television or movies, a character with obsessive compulsive disorder (OCD) is often portrayed as having a funny little problem.
Not so, said Jon Grant, MD, JD, MPH, a professor of psychiatry and behavioral neuroscience at the University of Chicago, during a talk called “Top 5 Complex Patients with OCD” at a recent meeting of mental health professionals.
Before going into some of his cases, he gave an overview of OCD, which he said has a prevalence rate of 2% and affects men and women equally.
Obsessions are recurring, distressing ideas or images, and compulsions are recurring behaviors designed to decrease anxiety caused by those obsessions, Grant said. But OCD differs from anxiety, in which people worry about things that are real, whereas OCD consists of irrational worries. However, the 2 disorders can coexist with each other, he said.
Unfortunately, Grant said, OCD is still not recognized or treated appropriately; often people are undermedicated, medicated with inefficient drugs, or attempt therapy with clinicians who aren’t trained.
In addition, when people present for treatment, they may not disclose the extent of their obsessions right away, he said. The most common obsessions involve contamination, pathologic doubt, somatic obsessions, symmetry, and taboo obsessions; of that last one, they typically are of a sexual, sacriligeous, and/or violent nature.
The patient doesn’t want to share their thoughts because “if they tell you a bad thought, they will contaminate you with the thought,” Grant explained.
The most common compulsions are checking, washing, counting, and needing to confess; avoidance can be another compulsion, he said.
Most people are not screened for OCD, although the World Health Organization lists it as one of the top 10 causes of illness-related disability. Onset is usually during childhood, at an average age of 10, or during adolescence or young adulthood, with an average of 21. Onset after age 30 is unusual, he said. Onset in boys typically happens earlier than in girls, and in childhood onset OCD, boys are typically more affected.
There are certain predictors for future OCD in adulthood when looking back at childhood, Grant said, namely separation anxiety and hypersensitivity syndrome (such as if a sock seam doesn’t feel right or clothing tags are irritating).
In addition, there is some evidence that some types of obsessions—namely of the taboo variety—may predict poor response to selective serotonin reuptake inhibitors (SSRIs), although this has not been thoroughly confirmed.
Another predictor of possible poor response to pharmacotherapy for children or adolescents is if there is the presence of a tic disorder, which occurs 30% of the time. Tics are more common in boys and may take the form of repetitive throat clearing.
Grant stressed the importance of conducting thorough suicide risk assessments, especially if the obsession is of the taboo type, which may cause extreme distress.
When making a diagnosis, clinicians need to query the patient about whether they think their obsessions are accurate. Patients with poor insight about their issues are more likely to also show less response to medications.
Providers should ask about unwanted thoughts, urges, and images that don’t make sense, and about how much time is spent engaging in the thought or behavior.
“Folks are obsessing for an hour a day,” said Grant, illustrating the time loss. “We all check the stove, we all check the door. But we don’t tend to do it for an hour a day.”
Noting how much time is regained—or a measure of how much they are obsessing—is also a good way to check on improvement during therapy, he said. Going from an hour to 5 minutes would be an improvement. However, he said, many people with OCD also have perfectionism issues such that “if they get from 5 hours to 5 minutes they may still not be satisfied.”
With treatment, two-thirds of those with OCD can improve, one-third may not. However, only one-third of patients get appropriate treatment from a psychiatrist. He sees this, he says, when patients travel to Chicago to see him, desperate, saying nothing has worked, and they rattle off a list of treatments they have tried.
Grant tries to spin the conversation in a positive way by telling them, “The great news is you haven’t been treated at all!”
Fewer than 10% of patients with OCD get evidence-based psychotherapy, which means, for this illness, exposure response prevention (ERP) therapy, he said. When performed properly, it is better than medication, but the problem is that few therapists know how to do it. In Chicago, the number of providers who can do it are fewer than 10, he said.
“It needs to be challenging and there needs to be homework in between sessions,” he said.
If a provider refers a patient for ERP, they should know the quality of the treatment their patient will receive.
Grant said his gold standard for drug treatment is an old, inexpensive drug called clomipramine and urged his fellow practitioners to “rediscover the glories of clomipramine.” Its side effects are dry mouth and constipation, the latter being managed with dietary changes.
Patients on clomipramine need an EKG before beginning and need to have the blood levels checked, and clinicians need to watch for interactions with certain medications. A therapeutic dose between is generally between 100 mg to 250 mg, with the initial dose starting at 50 mg and working upward.
In addition, if using SSRIs (fluoxetine, fluvoxamine, paroxetine, and sertraline), the doses are often higher than those used for major depressive disorder.
There are other medications that can be used as augmentation strategies, including serotonergic drugs, antipsychotics, glutamatergic drugs, and other agents. One glutamatergic drug, memantine, is approved for Alzheimer disease; it tends to work on cognitive inflexibility and gets a patient out of "being stuck."
Interestingly, Grant said an old study from Europe referred to morphine once a week as being helpful for those with OCD. While use of that drug would not be possible today, he said “it does tell us something about the mechanism of this. Some people will say the reason I’ve been abusing OxyContin is that it’s the only thing that helps with my OCD.”
Other possible treatments are aerobic exercise, 30 minutes every other day; transcranial magnetic stimulation; possibly ketamine for some patients; and in fewer than 1% of patients with OCD when every other treatment has failed, an ablative surgery called anterior cingulotomy, which has a success rate of 56%.
Still, Grant said ERP is the mainstay of treatment; patients struggle with it because of the work involved, but he said that, in reality, it only lasts for about 6 months, with 1 or 2 sessions per week.
“Exposure therapy is a lot like playing piano,” he said. “If you do not practice, you will not learn how to plays the piano.”
With CBT, the data is not as good as ERP, but it may be a starting point for people with taboo obsessions, who can then shift to ERP.
Grant described 5 complex cases. One was a 30-year-old woman who was housebound, with obsessions of contamination from the outside world. Grant began making housecalls, complete with a little black bag with nothing in it, because the patient suggested that he should have one. “I sit outside the door and do my therapy with her,” he said.
“Sometimes with severe OCD you have to go where the patient is,” he said, describing doing ERP with her in her apartment. After a year of this treatment, earlier this year, she was able to leave to go to his office for the first time, albeit layered in clothing to protect herself from "contamination." Although patients may be embarrassed by their appearance or behavior, she and Grant considered this a success and suggested that clinicians probe no-shows by patients with OCD for similar circumstances.
Another patient was 23 when he was found in a grocery store aisle after mumbling to himself for 8 hours about bad foods. He was thought to be psychotic and was taken to the hospital; it was determined that he has contamination issues and would bleach his food before eating it. This man was one who fell into the rare category of a patient who was approved for brain surgery after Grant obtained a complete history of every medication trial, dose, and duration, as well as previous ERP therapy. Another round of drugs and ERP was tried, but he was still treatment resistant. The patient underwent deep brain stimulation surgery for OCD, recovered, and is now a professor, Grant said.