Coming out of the Shadows

I've been taking care of individuals with OCD, teaching students and residents about it, and doing research into its manifestations and causes for a while now. And it continues to amaze me how little this disorder is understood, even by many professionals.

OCD isn't rare. Measurements of its prevalence - that is, the number of people who have it at any particular time - vary from study to study. The recent numbers in which I have the most confidence come from a 2012 study by Richard Kessler and colleagues, drawing on data from the monumental National Comorbidity Survey, which evaluated a representative slice of the US population at multiple sites across the country. They found 1.2% of the population to have OCD in any given year. Over the course of a lifetime, that number rises to 2.7%. That's one person in 40 -- which means almost 8 million people in this country and, assuming that these numbers generalize internationally, something like 176 million people worldwide. That's an enormous slice of humanity.

Any such calculations mask a great deal of complexity, obviously. Symptoms of OCD are much more common in the population; they've been reported in 13% of the population in a survey across European countries published in 2010, 21% in a 2013 study of individuals in Switzerland, and 28% in the United States in the National Comorbidity Survey. The variation between these numbers probably relates more to the way such symptoms are measured than to actual differences between the populations; regardless, it is clear that there are a lot of people out there who have potentially significant obsessive-compulsive symptoms that are not of sufficient severity to merit a formal diagnosis of OCD. The measured rate of OCD, therefore, will depend on how this severity threshold is set, and how it is measured. Some individuals with moderate obsessive-compulsive symptoms are going to get a diagnosis at some times but not at others, as the severity of their condition fluctuates.

In any case, OCD is not rare. It is more common than schizophrenia or bipolar 1 disorder, which each occur in about 1% of the population. Furthermore - as most people reading this blog surely know - it is often very disabling. In the original 1995 edition of the World Health Organization's Global Burden of Disease study it was projected to be one of the top 20 sources of disability, worldwide. (It has fallen off this top-20 list in more recent versions of this survey, due to changes in some underlying assumptions and in methodology - in the most recent version OCD is lumped in with 'anxiety disorders' and its morbidity is not separately calculated.) In the National Comorbidity Survey, 60% of people with moderate OCD and 80% of those with severe OCD experienced severe role impairment in home management, work, relationships, and/or social life.

Given this prevalence and this level of morbidity, the surprising thing is that OCD is not better recognized than it is. There are a number of reasons for this. Perhaps chief among them is the fact that many individuals with OCD can, and do, hide their symptoms, even from those closest to them. It is difficult to hide mania, psychosis, or crushing depression from those around you; in contrast, in all but the most severe cases many people can hide their specific obsessions (if not their anxiety) and their time-consuming compulsions from others and perform them in private, in surreptitious ways, or entirely internally.

A primary motivation for this, in many cases, is the fear of 'looking crazy'. Most people with OCD know very well how excessive or irrational their obsessions are, and how they might look to others. I call this the 'curse of insight'. As one patient once told me, years ago: "I feel crazy in a way that crazy people don't." I find this a very striking comment. If I had thoughts in my head, every hour of every day, that I knew would look 'crazy' to many people if I gave voice to them, I would do everything in my power to hide them, too. Wouldn't you?

The fact that OCD symptoms are often hidden, at least in proportion to how common and severe they are, is not without consequences, however. It was recently noted that a typical person may spend 17 years between first symptoms and getting appropriate treatment. Hopefully that number would be lower now than it was back in 2004, when Michael Jenike made the observation, but it is appalling. When people are doing everything they can to hide their symptoms, they are less likely to seek help. And when they do seek help, it's all too often a matter of luck whether the person they consult with is knowledgeable in the diagnosis and treatment of OCD.

This last fact is particularly troubling to me, as it represents a failure of our training system. Shouldn't anyone who is trained and credentialed as a psychiatrist or a therapist know the signs and symptoms of a major mental health condition, and be qualified to diagnose and treat it (or at least make a referral for appropriate treatment)? But the fact that they're often not is a direct consequence of the tendency of OCD to remain hidden. Psychiatric or psychological training is only as good as the knowledge base of the people providing it, and the experience gained during training is constrained by the patients that students or postdocs come into contact with. If OCD patients are not seeking treatment in proportion to the prevalence and severity of their symptoms, it is no wonder that many trainees complete a residency or training program without having seen one. Furthermore, many training programs are associated with hospitals, and OCD patients are not hospitalized in general hospitals, at least for their OCD, nearly as often as those with schizophrenia, bipolar disorder, PTSD, depression or any of a dozen other major mental illnesses.

There's another pernicious consequence to the way that OCD tends to remain in the shadows. It receives far less attention from the major funders of research - the National Institutes of Health and the pharmaceutical industry - than other conditions of comparable severity. A quick search of the abstracts of NIH grants in the 'ProjectReporter' database reveals 134 grants containing 'obsessive compulsive' in their Abstracts; for schizophrenia, there are 1,227. Prior to Roche pharmaceuticals' ongoing 'Skylyte' trial of the new glycine reuptake inhibitor bitopertin,* the pharmaceutical industry has not pursued a new drug for OCD since the 1987 trial of fluvoxamine. (There have been several trials looking at already-approved drugs, with OCD as a secondary indication, but this represents both less risk for Pharma and less benefit for patients, since those drugs are available to be prescribed 'off-label' in any case.)

Fortunately, this situation is gradually changing. There are speciality OCD programs at more and more major training centers, which ensures that OCD will not be ignored. And as the disorder is better understood in the population at large, more and more patients are seeking appropriately qualified help. The efforts of patient advocacy groups, especially the International OCD Foundation, has played a major role here, as has the sympathetic portrayal of individuals with OCD in television shows such as 'Monk' and the recent spate of reality-style shows depicting OCD treatment (even if they are sometimes sensationalized).

And as OCD comes further and further out of the shadows, training will improve, and funding for research and education will grow. I was, honestly, surprised that there are 134 grants on OCD at the NIH; I'm sure that number would have been much lower five years ago. The decision of a major pharmaceutical player to invest in a study of a new medication for OCD is a very promising sign. Philanthropic activity in this area, which will permit growth of grant programs such as that of the IOCDF, is growing.

So I'm hopeful. Patients will always do better when they are willing to seek appropriate help and share their experience, and when their caregivers recognize their condition immediately. Treatment, either psychotherapeutic or pharmacological is always better when the provider knows what they're doing. Understanding and treatment will always advance more quickly when it is funded appropriately. And all of these things seem to be moving in the right direction. Let's keep it up.

* Disclosure: my own Clinic is one of the sites for this study.