Dr. Daniel Knoepflmacher (Host): Welcome to On the Mind, the official podcast of the Weill Cornell Medicine Department of Psychiatry. I'm your host, Dr. Daniel Knoepflmacher. In each episode, I speak with experts in various aspects of psychiatry, psychology, research, and other important topics on the mind.

Today, we'll be focusing on two psychiatric diagnoses, obsessive-compulsive disorder or OCD, and a related but lesser known condition called olfactory reference disorder, or ORD. OCD is a potentially disabling condition marked by intrusive, unwanted thoughts and repetitive behaviors aimed at easing distress. While its symptoms can take many forms from fears of contamination to checking rituals, each reflects the same underlying struggle. A battle for control over the relentless pull of obsessive thinking.

Olfactory reference disorder shares some of these features, but takes a very specific and often misunderstood form. People with ORD are convinced they emit an unpleasant body odor despite reassurance to the contrary. This belief can lead to profound shame, social withdrawal, and significant impairment in daily functioning. ORD has only recently gained formal recognition and diagnostic systems. And its overlap with OCD is helping researchers better understand the boundaries of obsessional illness.

Both OCD and ORD often begin in adolescence or early adulthood and, without effective treatment, can persist for years. Yet evidence-based therapies, both medication and specialized forms of cognitive behavioral therapy offer real hope for recovery.

Today, we'll hear from a leading expert whose work has advanced our understanding of these conditions and the treatments that can help people reclaim their lives. I'm pleased to welcome Dr. Katharine Phillips, Professor of Psychiatry in the Weill Cornell Medicine Department of Psychiatry and Director of Research and our General Psychiatry Residency Program. This is actually her second time joining me on this podcast, having discussed body dysmorphic disorder with me on a prior episode. Kathy, it's wonderful to have you back on On The Mind. Thank you so much for doing this with me today.

Dr. Katharine Phillips: Well, thank you. I'm really delighted to be here and to have the opportunity to talk about these really interesting and important conditions. So, thank you.

Dr. Daniel Knoepflmacher: Sure. And our goal today is to provide our listeners with a comprehensive overview of OCD and olfactory reference disorder. And last time we spoke on this podcast, you described to me-- I remember the story well-- how you developed an expertise in treating body dysmorphic disorder. I'm curious, was it your interest in that other diagnosis that then led you to become expert in OCD more generally and these related disorders?

Dr. Katharine Phillips: Yes. I'd say so. I might have mentioned this on the prior podcast, but my interest in BDD developed long ago, actually while I was still a resident when I saw patients who thought they were really ugly, but they weren't, they looked normal or even attractive to others, but they were very obsessed with perceived defects in their appearance. And they thought their hair was falling out and they were going bald, or they had terrible acne scars all over their face. But these were normal-looking people. And they suffered tremendously. Many were very impaired. Many were quite suicidal because of this misperception that they look abnormal or defective in some way.

And at the time, so this was back in the early '90s, the field knew next to nothing about body dysmorphic disorder, BDD, and we didn't know how to treat it, but I realized that BDD seemed to have some similarities to OCD, especially the prominent obsessions and compulsions, although they do have some important differences. But because the field knew a fair amount about OCD at that time, and I was hoping that what we knew about OCD could help us understand body dysmorphic disorder, which really hadn't been studied at that point, so I delved into learning about OCD while also trying to figure out BDD, you know, whether it's key symptoms, how can we treat it because we had no treatments at the time.

And I think another piece of it is, at the time, most mental health professionals and the public alike had never heard of body dysmorphic disorder or olfactory reference disorder for that matter. But there were a few OCD experts who had seen some of these patients, some of the BDD patients in particular, and who realized that this was an important mental health problem, because they could see the suffering and the impairment that these obsessions with perceived defects and appearance caused them. And so, fortunately, the OCD world gradually adopted BDD, which was really important. Because back in the '90s, BDD was widely misunderstood and considered to be a silly problem and often dismissed as simply vanity, which of course it's none of those things.

So, I kind of entered the OCD world along with BDD, and that's how I really got involved over the decades in OCD and related disorders like body dysmorphic disorder, olfactory reference disorder, skin-picking disorder, hair-pulling disorder, trichotillomania, et cetera.

Dr. Daniel Knoepflmacher: But you really are a known expert in OCD as well, I mean, attending international conferences on that. And you mentioned that OCD was better known at that point. I'm wondering if you could tell us the history of how OCD developed as a diagnosis within psychiatry.

Dr. Katharine Phillips: It's an interesting history because it was described many centuries ago, as long ago as the 14th century, but it was viewed within a religious context. So, obsessions of a blasphemous or sacrilegious nature, for example, were thought to reflect possession by the devil. And then, fast forward to the 1800s where there were a few psychiatrists, the French psychiatrist, Esquirol, and the German psychiatrist, Westphal, who viewed OCD within a medical as opposed to a religious framework and provided definitions of OCD.

And from a diagnostic perspective, you know, it's been in the various additions of DSM. In earlier iterations, like back at DSM-II, it was viewed as a type of neurosis; and then, subsequent DSMs, as a type of anxiety disorder. And then, most recently in the DSM-V, and I was the chair of that work group-- it was published in 2013-- we added a new category of disorders, the obsessive-compulsive and related disorders. And so, of course, OCD was in that group along with body dysmorphic disorder or trichotillomania, excoriation disorder and hoarding disorder.

Of course, the work group didn't just make that up. This idea of an obsessive-compulsive spectrum of disorders had been around for several decades and gradually gaining traction. And it was thought that when we organize disorders in DSM, we try to put possibly related disorders together, and for various reasons. And so, OCD is now classified as a type of obsessive-compulsive and related disorder, both in DSM-V and in the newest version of ICD and ICD-11.

Dr. Daniel Knoepflmacher: To be clear, prior to that, since it was in earlier editions, it was linked to anxiety?

Dr. Katharine Phillips: Yes. Yes. And I think because maybe for a few reasons. One is that OCD has been well-recognized to trigger a lot of anxiety for most patients. And that was part of conceptualizations of OCD back in the 1800s. So, the anxiety can be very prominent be cause the obsessions are very distressing, typically, and anxiety-provoking and to try to alleviate the anxiety that they cause. For example, "Oh no, I'm really contaminated," or "Oh, I just committed a terrible sin," or sometimes there's thoughts of harming somebody, but there's no intention or wish to do that. So, it creates a lot of anxiety for patients and the compulsions are an attempt to alleviate the anxiety, such as hand washing or excessive praying or other things. Although, if they alleviate anxiety, it's just temporarily.

So, the link with anxiety was pretty clear. I think, you know, another possible reason that we didn't have the group of obsessive-compulsive and related disorders prior to DSM-V and ICD-11 was that body dysmorphic disorder was under the radar, right? It really wasn't well-recognized. It's actually becoming better and better recognized since I started my work in the area, back in the early '90s. But it takes a while.

And then, excoriation disorder was also was new to DSM-V. Trichotillomania was classified as an impulse control disorder. Hoarding disorder wasn't yet in DSM-V. So, I think it was also the fact that there were some increasingly better recognized disorders that are related to OCD and some new conditions that entered DSM-V. So, it made sense at that time, combined with sort of the recognition over the prior few decades that these disorders are related to one another, have some overlapping features, et cetera. It made sense to create this new category of obsessive-compulsive and related disorders.

Dr. Daniel Knoepflmacher: I'm curious, was there work in the neurobiology and the kind of the neuroscience research that also backed up some of that differentiation as distinct from anxiety or linking these related disorders?

Dr. Katharine Phillips: Yes. I think there's no ideal way to group disorders together in any diagnostic manual. I mean, I think if we knew what really caused all of these disorders, then we could group them together based on their cause. But that, of course, is going to be very complex and a combination of multiple genetic and environmental factors.

So, the task force used 11 so-called validators to try to get a sense of how related do disorders seem to be to one another or how different from one another. So, some of the validators are symptoms similarity, do they run together in families? Is treatment response similar? Biomarkers to the extent we know about those, et cetera. And clinical utility is also considered. So, we published a bunch of papers on this, but tried to use these 11 validators, which really are based on the work of Robins and Guzé, you know, many decades ago, an expansion of them to try to determine are these disorders distinct from others, which ones are most closely related to which other ones. And then, that the more closely related disorders were grouped together in DSM-V. And I think just from a very simple symptomatology perspective, all of the obsessive-compulsive and related disorders are characterized by either prominent obsessional, preoccupation, you know, intrusive, unwanted, unpleasant thoughts that are hard to control and/or repetitive compulsive behaviors. And most of the disorders in this category have both.

Dr. Daniel Knoepflmacher: How prevalent is OCD?

Dr. Katharine Phillips: It is pretty common. The 12-month prevalence is about 1-2%, and the lifetime prevalence in the U.S. is maybe two to 2.5%. So, it's a fairly common disorder.

Dr. Daniel Knoepflmacher: Can you tell us the gold standard process for diagnosing OCD?

Dr. Katharine Phillips: I would say that it's the DSM diagnostic criteria. And so, we look for the presence of obsessions, compulsions, or both. And it's usually both in OCD. So, obsessions are persistent thoughts, urges or images that are intrusive, unwanted and that, in most people, cause marked anxiety or distress. And I just want to underscore intrusive and unwanted. These are very unpleasant thoughts that force themselves into people's minds that they don't want to be having. Because some of these thoughts involve thoughts of harming oneself or sometimes thoughts of harming someone else, and we have to differentiate these obsessions of OCD from homicidal ideation or suicidal ideation. And a good way to do that is to ask, you know, are they intrusive, unwanted thoughts that usually they don't make sense to the person having them. Have they ever intended to act on them? Most patients with OCD are horrified by that thought, right? "No, never. Never. I would never do that." So, intrusive, unwanted. In the old days, we might have called them ego-dystonic.

And then, compulsions, which are repetitive behaviors such as excessive hand washing or checking that the person feels driven to perform in response to the obsessions. And they're aimed at reducing or preventing the anxiety or distress caused by the obsession. So, an example is worrying that you're going to get contaminated if you go outside of your apartment, right? So, you just stay inside all the time. And then, you may engage in a lot of hand washing. So, there's often a lot of avoidance of situations that are feared. And then, perhaps the apartment is also decontaminated frequently, or if someone comes into the apartment, they have to take most of their clothes off and they have to be immediately laundered and that kind of thing so contamination doesn't come in.

But again, all of this is un excessive, unwarranted, and often doesn't make sense to the patient, although sometimes it does. And then, for the definition to meet the diagnostic criteria, the obsessions or compulsions must take at least more than an hour a day or cause clinically significant distress or impairment in functioning. And I think this is important also, because we may all have the urge to check the stove maybe twice before we leave the apartment, right? But that's not OCD, that's not more than an hour a day. It doesn't cause significant distress and doesn't impair functioning, right? It doesn't keep you from leaving.

We may worry about illness, getting illness from time to time, or we may worry about a moral issue that we've done something terrible. But with OCD, it's excessive and, again, is time-consuming or causes significant distress or impairment and functioning.

I like to use the Y–BOCS symptom checklist. The Y–BOCS is the standard severity measure in the OCD field. And I like the self-report symptom checklist. I ask patients to fill it out before I even see them for the first time just to make sure I haven't missed any symptoms, right? Because they check off, it has the different aggressive or harm-related obsessions, sexual obsessions. And again, these are unpleasant, unwanted thoughts, contamination, obsessions and the compulsive behaviors that are related, checking or reassurance seeking or decontamination, et cetera. Patients just checks off which ones they've had currently or in the past. Then, when you see them, you can follow up and ask a bit more about them and determine are are the ones that are checked really symptoms of OCD or they seem to be something a little bit different. I think it often does take some clinical judgment. And then, you add anything up that you think is OCD, because usually people have more than one obsession, and then you apply that guideline of more than an hour a day clinically significant distress or impairment and functioning. But I like this checklist because it saves a lot of time and patients I think sometimes are more willing to report things on a self-report questionnaire. It breaks the ice a little bit and opens the avenue for conversation about it when you actually meet with them.

Dr. Daniel Knoepflmacher: So, just to be specific for our audience, I think many might be familiar with this, but when you say Y–BOCS, you're referring to the Yale-Brown Obsessive-Compulsive Scale.

Dr. Katharine Phillips: Yeah.

Dr. Daniel Knoepflmacher: And so, I mean, that's a screen, essentially a scale that can score. It actually describes severity as well.

Dr. Katharine Phillips: Yes. I like the symptom checklist, the self-report version first, just to figure out what are the OCD symptoms that the patient has, right? What are their obsessions? What are their compulsive behaviors? And then, once you know what symptoms they have, then the Y–BOCS severity measure assesses the severity on average during the past week, for example, how much time do they spend obsessing each day on average? One to three hours a day, three to eight hours a day, et cetera? It assesses a level of distress, level of impairment, degree of resistance over the thoughts and degree of control over the thoughts. And then, ask basically the same questions for the compulsive behaviors. And it's a really great way to assess their severity of OCD at baseline before you start treating the patient. And then, over time, how are they doing over time? How well is your treatment working? So, it is, I think, the most widely used severity measure of OCD that we have.

Dr. Daniel Knoepflmacher: I mean, it sounds like you're using it in some ways as a means of educating the patient as they're understanding their symptoms in this standardized scale. It can kind of, I imagine, guide conversations about what this condition is for that person.

Dr. Katharine Phillips: Yes, very much so. I think that's always an important part of assessing and treating any patient for anything is just helping them explain how you came to the diagnosis and what it consists of. And sometimes I'll ask, "Are you familiar with this disorder?" Right? Quite a few people are familiar with OCD, and I ask if they've thought they've had it, and if so, why? And if not, why not? And just explain how the diagnosis fits them. And I always like to say, "You know, it's a pretty common disorder and we have really good treatments," right? Because some of them have been really suffering for a very long time or sadly getting suboptimal care. And we have such great treatments for this disorder. So, I like to give them hope about how very likely they can get a lot better with the right treatment.

Dr. Daniel Knoepflmacher: As we've been discussing this earlier, you spoke about how in the past maybe there was an association with anxiety based on the fact that there are anxious symptoms. Intrusive thoughts are something we think about sometimes with other diagnoses. One thing I know as medical students are learning about psychiatry, they learn about personality disorders and they hear about OCPD, which is a personality disorder, not OCD. Can you speak about what other diagnoses may be confused with OCD and how you're able to differentiate?

Dr. Katharine Phillips: It's a long list, actually. Very long list. And they are in the diagnostic criteria. It is one of the criteria for OCD is that the obsessions and the compulsive behavior should not be better explained by another disorder, right? Because you're right. I mean, so many disorders involve obsessive thoughts, preoccupations, excessive worries, rumination or repetitive behaviors that people feel compelled to do. And it is important that these other disorders aren't misdiagnosed as OCD because the treatments are different.

So, I think one disorder can somewhat easily be confused with OCD is generalized anxiety disorder, which is excessive worry, but it's more about real-life everyday concerns, right? It's more about, "Oh, my finances and what's happening there? Am I going to be able to sell my house? The housing market isn't great." It's excessive, right? But it's really about everyday worries, and there's also a lack of compulsive behaviors, whereas why OCD is not usually about harm or aggression or contamination or sexual topic or religious, or a need to know. You know, it's about doubting often or a need for symmetry or exactness.

Another one is body dysmorphic disorder. People who think they look abnormal, they look ugly or defective when they don't, and they obsess a lot and they have compulsive behaviors like neurochecking, right? That's not OCD. So, you want to be sure not to misdiagnose body dysmorphic disorders, OCD.

Eating disorders, there's obsession about food, right? And weight and maybe weighing yourself many times a day. So, you can see these obsessional preoccupations and compulsive behaviors, but they're different than OCD in many important ways. And the treatment has important differences.

There's some disorders like gambling disorder, where people get really focused on Gambling, but that's not OCD either, right? So, someone has gambling disorder. You don't want to misdiagnose that as OCD. Major depressive disorder, often guilt ruminations, ruminations about the past, It's often guilty ruminations. And that's different than OCD. Again, with OCD, it's more not just ruminating about your past, right? It's these intrusive, unwanted thoughts. It's more about the present, right? "Oh no, I'm going to get this terrible illness if I touch this doorknob and I don't wash my hands for 15 minutes." And we don't see those rituals, the compulsive behaviors in depression.

I'm going to be talking about olfactory reference disorder. People who think they smell really bad when they don't, that's different than OCD. Then, there the disorders with repetitive behaviors, hair-pulling disorder, also known as trichotillomania, excoriation (skin picking disorder). These repetitive behaviors, they seem related to OCD, but there are different treatments quite different from that of OCD. So, tic disorders, stereotypical movement disorder, that a variety of disorders involving abnormal movements or behaviors that we want to be careful not to confuse with OCD. It's important to make the right diagnosis, because for a lot of reasons. But one is it leads to implementing the recommended treatments.

Dr. Daniel Knoepflmacher: Yeah. And it can get quite complex, because I can think of psychotic disorders, you know, certain types of presentations related to schizophrenia where there can be real obsessive or compulsive aspects, autism spectrum disorder, a stereotyped behaviors. And maybe sometimes there may be more than one diagnosis at play. So, it is complex. Given the distress that we're talking about that people struggling with OCD face, I'm curious about the associated risks for self-harm suicide.

Dr. Katharine Phillips: Yes, there definitely are risks in terms of suicidal ideation, thoughts that life isn't worth living, wishing to be dead. The prevalence varies across studies, but probably somewhere between one-third and two-thirds of people with OCD have these thoughts that at some point during their life. Suicide attempts, those estimates vary even more. But probably about 10-46% depending on the study, somewhere in that range. When it comes to actual suicide, in a very large population-based study in Sweden in people with OCD, the risk of dying by suicide was more than nine times that in the general population. So, all of these suicidality numbers are higher than in the general population. So, we do need to monitor people with OCD for suicidal thinking, history of suicide attempts. And I think especially those with more severe OCD, those with co-occurring depression and anxiety or history of suicidality, because those variables may increase the risk.

Dr. Daniel Knoepflmacher: Well, I'm going to talk about something intrusive that is not intrusive thoughts, but just for our listeners who may be hearing noises in the background. One of the challenges of doing a podcast recording in New York City is that things happen outside. And I actually am seeing as we're recording this, that there is somebody outside of Dr. Phillips's window, who's working on the facade of her building and maybe hammering at times. So, we apologize for any noise that you might be hearing in the background, but we want to power on and continue because this is such an important topic. So, just to explain that if people do hear that noise in the background. So, I want to turn to treatments. You've alluded to pharmacological treatments, psychotherapeutic treatments. Can you describe what is effective for OCD?

Dr. Katharine Phillips: Yes. We have two first-line treatments, which are both very good treatments. One is exposure and ritual prevention, also called exposure and response prevention, ERP. It's a type of behavioral therapy. We also have the serotonin reuptake inhibitors, SRIs, SSRIs, great class of medications that is often used for an anxiety disorders, depression, certain eating disorders, I mean, a whole host of mental health problems.

And I'll start with the ERP, the exposure and ritual prevention. And the basic idea is that the patient agrees, because it's a very collaborative process, right between the therapist and the patient. Patient agrees to expose themselves to their obsessions without performing the rituals. So, for example, you have contamination fears and you wash your hands for hours a day. The idea is to touch whatever you think the contaminated surface are. Maybe the doorknob, maybe it's something outdoors, maybe it's your toilet seat. And then, don't wash your hands and you start with easier situations, because this is quite anxiety-provoking. We don't want it be too anxiety-provoking for the patient, but a little challenging, right?

So, we start with easier situations and then move on to more difficult ones. And the idea is that the person learns that the feared consequence doesn't happen, right? So, you touch surfaces that you worry are contaminated, you don't wash your hands, you don't decontaminate with Purell or whatever, and you don't get sick. And so, it's a very much of a learning process. And then, you can add cognitive approaches as well. So, that's CBT, right? The cognitive approaches plus the behavioral therapy, which is the exposure and response prevention. And so, an example of a cognitive strategy is to help the person learn about something called cognitive errors, right? "Oh no. If I don't check the stove 30 times before I leave the apartment, the apartment will burn down." Well, there's some definite cognitive errors in there, like fortune-telling, catastrophizing. Can you really foretell the future? It's, you know, very hard to foretell the future, right? Maybe some psychics say they can do that, but really, can you really foretell the future? So, you learn about overestimation of risk and threat, and you learn to develop more accurate and helpful thoughts. But the exposure and ritual prevention is the key element of the cognitive behavioral therapy.

The medication, the serotonin reuptake inhibitors widely used medications like fluoxetine, Prozac, sertraline, also known as the brand name, Zoloft, they seem to work better than other types of antidepressants or other types of medications for OCD, we often need high doses. And I think this is a problem I often see is that they tend to be underdosed. Sometimes we even exceed the manufacturer's maximum dose. Really, most of those maximum doses were developed for depression, right? And OCD obsessional disorders, we tend to need higher doses. Don't exceed the maximum FDA dose for citalopram, Celexa, I don't use it anymore for that reason because the maximum dose is firmer, I think, than for the other drug, the medicines. And it's too low to often effectively treat OCD. So, we often need higher doses. That's key. They usually work very well gradually in reducing the obsessions, reducing the anxiety that the obsessions cause, reducing the urge to do the compulsive behaviors. And they usually are very well tolerated. They usually have no side effects or pretty minimal ones I find most of the time, that often get better with time. So, thank goodness we have this great class of medication. And then, just to give you a sense of the higher doses we sometimes use. So, fluoxetine, Prozac, we can go as high as 120 milligrams a day. Sertraline, Zoloft, we can go as high as 400. We don't always have to, but these doses are endorsed by the American Psychiatric Association Practice Guidelines. So, you have good backup if you want to use these doses. And usually, people tolerate them quite well.

And then, if an SRI alone isn't sufficient, even with good dosing and taking it every day, of course, that's really, really important. Then, we can add other medicines in, you know, an approach called augmentation. We can add neuroleptic, also called antipsychotics. But antipsychotic is a bit of a problematic name because they treat such a broad array of symptoms, psychiatric symptoms. So, antipsychotics, way too narrow. And anyway, they're also called neuroleptics. And often prefer aripiprazole, Abilify. I would say that medication has the best supporting evidence, also risperidone. And then, other classes of medication, buspirone, also known as Buspar. And sometimes we even use n-acetylcysteine, which is available as a supplement. There's an array of medications we can add in to boost the effect of the SRI. And then, if one SSRI doesn't work, we can try another. And then, if another doesn't work, there are multiple medication options. But these meds usually work. They usually work quite well.

Dr. Daniel Knoepflmacher: That last point is important. There's differences in treatments with the mainstay SRI medications. You mentioned the dosing, but also the effectiveness. I mean, if I think about a study looking at depression like STAR*D for instance, which was a major study, looking at the effectiveness of SSRIs in first round treatment and looking at trying to develop an algorithm from there. It seems to me from what you're saying, that there's actually more a higher percent of efficacy with SRIs, the specific SRIs and at the right doses with OCD, than there might be in a general population for depression. Is that true or not? Or are there studies that have looked at it similarly to STAR*D?

Dr. Katharine Phillips: Yeah. We don't have a STAR*D type of study in OCD, I have to admit to the fact that I often use these kinds of doses for depression too if a lower dose doesn't work, and it often is very effective. And a survey of members of the American Society of Clinical Psychopharmacology found that they often also for the treatment of depression, often if they needed to, right? And if these meds are well-tolerated, which they often are, often use these higher doses also for depression if they needed to.

I think the response rate is maybe about the same. I don't think there's a study that's compared depression to OCD, in a randomized controlled trial and looked at response rates. But I'd say about the same. They're both very treatable conditions. And the strategies are somewhat similar. You know, you try and optimize the first medicine. Medication adherence is so important, because we know from so many studies that medication adherence is often pretty poor. People aren't taking their meds, or missing them a few days a week.

And so, I spend a lot of time trying to help find a strategy that's going to work for the individual patient. Some don't need a specific strategy, but most do, whether it's a pill box or an app, or setting an alarm on their phone, that's really, really important. Then if one medicine doesn't work, we try another. And then, you can use these add on another medicines. Of course, you can always add therapy as well. And we have a broader range of therapies that work for depression. For OCD, we really want to do the exposure and response prevention. And we can add cognitive techniques as well. But most people really get better with these treatments. Probably on average, we need higher doses of the SSRIs for the obsessional disorders like OCD, body dysmorphic disorder, olfactory reference disorder, which I'll be talking about soon. I think we typically need somewhat higher doses.

Dr. Daniel Knoepflmacher: What's the typical course for patients that are effectively treated? Is it they get better? Is there remitting and relapsing? what do you experience in, your practice?

Dr. Katharine Phillips: In my practice, gosh, I wish I could say everyone got better, but I think the vast majority do. And sometimes it's with the first medicine you try. And sometimes it takes some adding in another medication, making sure it's taken every day, et cetera. But most patients do very well. And some become completely symptom-free. Some have just a very low, very minimal symptoms that they feel they can tolerate. And then, for more severe OCD, I always recommend both medicine and exposure and ritual prevention. And that's also just a very effective treatment for many patients as long as they really participate and do the homework, right? It does take some sort of dedication and effort on the part of the patient. But it's a wonderful treatment and is often very, very helpful.

So, I find that most people do well. And once they do well, I generally recommend they stay on their meds for a while, right? Especially the SRI. Neuroleptic, we may try to stop that a little sooner. It depends on the individual patient, but most patients continue to do well. Some women get a little worsening of their symptoms, sometimes premenstrually, even when they're pretty well treated, but most don't. Sometimes stress will temporarily make symptoms a little worse, but that's not a full relapse, right? It's just sometimes there's a little waxing and waning of the symptoms, but I have quite a few patients who are completely symptom-free after treatment. And, if symptoms do get worse, notably worse, I always wonder did they miss their meds? Because I think that's the most common explanation, or sometimes the pharmacy will replace one generic formulation with another, right? One brand with another. And so, I always ask the patient, "Does the pill look different? Is it different color, different size?" Because sometimes it's the same dose, but there's a little wiggle room in the dose. So, one brand may be a little different from the other, or it might be absorbed a little differently, maybe absorbing a little less. So, sometimes it doesn't happen often. But sometimes if they get worse and they say, "No, I'm taking it every day. I'm not unusually stressed," then we'll call the pharmacy and ask, "Did you change the brand?" And if they did, we'd just go to a little higher dose or ask, "Can you get that old brand back? That would work better?" So, most people do well.

Dr. Daniel Knoepflmacher: What about some of the newer treatments? I know that there's research looking at TMS, for instance, a lot of different conditions. They're looking at psychedelic studies. What can you say about some of the newer directions for the future perhaps?

Dr. Katharine Phillips: Right. So, TMS, transcranial magnetic stimulation has been studied more for depression, but it has been studied for OCD. And there are two different forms of TMS that are used. Magnetic fields are created and change the circuitry of the brain. And we know that OCD is a brain-based disorder. And so, we know that the brain becomes "normalized" with medicine and with CBT when they work, we can see evidence for that on functional MRI, which shows the function of the brain. We can see that this hyperactive obsession loop in the brain quiets down and becomes normal again with both meds and therapy when they work, which they often usually do. And so, TMS can also change the functioning of this hyperactive circuit in the brain. So, one form of TMS is sort of what's typically used for depression, repetitive TMS. You could also think of it as maybe surface TMS that targets certain areas of the brain and studies have been done and continue to be done examining the effectiveness of this treatment for OCD. There's also a different form called deep TMS. And rather than holding a coil above the head, the person actually has like this helmet-like thing that goes over their head and the magnetic stimulation gets a little deeper into the brain. And it targets a somewhat different area typically. And it's FDA cleared actually for OCD. You are supposed to provoke the OCD symptoms during the treatment. That doesn't always happen. It's not clear whether that symptom provocation during the treatment is necessary. it is at this point considered an add-on treatment. So, trying some kind of medicine and/or therapy at the same time. And it's not a first line treatment at this point. That may change in the future, I don't know. But you want to give medication, the SRIs and plus minus adding in potentially some other meds, and the exposure and response prevention a good try first. But TMS is an option.

And there's some others, deep brain stimulation. This is actually brain surgery. The good news is it's reversible, so you're not making irreversible changes to the brain, but it's challenging treatment for both the patient and the clinician. It's very labor intensive, risk of infection, but it is FDA approved for OCD. I think because it's for very severe OCD, which can cause incredible suffering when it's very severe. So, it is available. I think if you ever wanted to get this done, you'd want to have it done at a center that specializes in doing it for OCD.

And I would say the psychedelics, that's an emerging story. Ketamine is an emerging story. I think they're all considered experimental right now. And there's a mix of data for ketamine, you know, some positive, some negative studies. So, don't recommend that people try ketamine or psychedelics as a treatment for OCD. We have tried and true medications that have been shown for a long time to be effective and have fewer risks, actually. So if you ever wanted to try those treatments, you'd want to be part of a clinical trial, part of the study.

Dr. Daniel Knoepflmacher: Thank you. I want to turn now to what we've been talking about, another related disorder, olfactory reference disorder. I know you've written a lot about this. It's also referred to as olfactory reference syndrome, I'm just going to use the acronym ORD today. And unlike BDD, which we've talked about together in the past, where that's a preoccupation with physical appearance, in ORD, the obsessive focus is a misperception about one's body odor.

This diagnosis has not received the same amount of attention within psychiatry or I would say in the mind of the public as is the case with BDD. I mean, that episode that you did on BDD has one of our highest listened to episodes. So clearly, there's a lot of interest in BDD out there. I'm not sure that the public is that aware of ORD. So, what should we know about the diagnosis of ORD?

Dr. Katharine Phillips: Yeah, it's a really important disorder. Gosh, if I'd been able to have two parallel careers, I would've done with ORD what I did with BDD, right? Because it's really important and it's still kind of early days. I mean, on the one hand, it's been described since the 1800s, right? But on the other hand, the research and evidence base is much more limited than for OCD and body dysmorphic disorder. But it's overlooked. It's misunderstood. It's sometimes misdiagnosed as OCD or as psychotic depression or even schizophrenia or some other psychotic disorder. And, as you mentioned, these are people who think they smell bad, that they emit of foul or offensive body odor and that other people can smell it and are disgusted by it and notice it.

So, it can cause a lot of shame, a lot of social isolation, because you don't want to go out thinking everyone thinks you stink. And so, it's just to give a quick example, you know, as someone who thinks that they have horribly bad breath and smell like really stinky sweat, right? And think that when other people sniff or wrinkle their nose or cough, it's because of how they smell, which of course it isn't, right? And this person may shower for three hours a day, change their clothes seven or eight times a day because they think as soon as they put the clothes on, the clothes get all stinky too, so they've got to get rid of those. They may check their breath and armpits for odor, brush their teeth excessively, which may not be good for your teeth. They often try to camouflage with soap or deodorant or perfume or mouthwash to try and hide the perceived odorant. Some of the patients I've seen have been very impaired by this. I mean, on average, they are quite impaired. They can become very socially isolated, quit jobs because they think people are making fun of them because of how they smell, even though that's not actually happening, it's all a misperception.

So, the most common perceived odors are halitosis, perceived bad breath, followed by sweat, flatulence and fecal odor, a perceived odor of urine or genital odor. And most people with this disorder are certain that they really do smell bad, right? Much poorer insight than in OCD and even poorer than in BDD. So, most of them are certain. So, I think that's where it can sometimes get confused with a psychotic disorder.

And then, the rituals, you know, just as we see in OCD, but they're different. They're in response to this body odor that the person perceives. So, smelling or checking themselves for body odor, or they're sniffing their clothes for body odor and laundering them excessively and trying to check out how other people smell. Can they smell their body odor? And how is it compared to theirs? And I always think, of course, they smell much worse. Maybe excessive showering, bathing, excessive usage of the toilet. I've seen that to check for anal seepage if they perceive a fecal odor, excessive toothbrushing, et cetera.

And then, the camouflage, you know, I mentioned some examples of camouflaging. Maybe eight pairs of underwear if you think you're emitting genital or fecal odor or special prescription deodorants and gum and mint and all those kinds of things. And just to mention the referential thinking, because this is a very important part of the clinical picture. So, referential thinking, sometimes called ideas or delusions of reference, thinking that other people are taking special notice of them in a negative way, noticing them much more than other people than they would notice other people because of how they smell, right? So, pretty much any behavior of someone else can be misinterpreted as a response to the odor. It's not just behaviors, it's comments as well. Like, "Oh, it's kind of warm in here, you know, maybe we should open the window and get some fresh air." That would be interpreted as, "Oh, no, you know, it's really because I stink." Sniffing, moving away from the person, coughing, saying, "Oh, you know, do you smell that smell?" You know, "Hmm, I wonder what that odor is. Oh, it must be because of me, right?" is the way it is interpreted. And some people think they can be smelled 20 or 30 feet away, which of course they don't smell at all. You know, or sometimes they smell like the camouflage that they're using, right?

So, one person I saw many, many, many years ago sprayed herself constantly with ammonia slightly diluted with water. It was in a spray bottle. She carried it with her everywhere she went. When I met her out in the waiting room, she's sprayning herself out in the room with the ammonia and to hide what she thought was her terrible body odor. And you could kind of smell the ammonia. But otherwise, no one in her life ever thought she smelled bad. And so, they can be quite impaired in their day-to-day functioning, because they don't want to be around other people. And often, they're just very obsessed and spending a lot of time on the rituals. And we have just preliminary data on suicidality, but it's quite concerning. We find high lifetime rates of suicidal ideation, suicide attempts. And then, a study that was done a number of years ago, it was a follow-up study of people with olfactory reference disorder over, I think, it was 17 months, and close to 6% actually committed suicide. That's an astonishingly high number. So, you know, it was a small study, it was a relatively brief follow-up period. So, that's not a precise number, large confidence interval around that. But it's very concerning and fits with my clinical experience seeing a lot of these patients. So, we have to really be aware of that and monitor closely for suicidal thinking and suicidal behavior.

Dr. Daniel Knoepflmacher: It's so interesting to think about this as a different sensory pathway than BDD, and yet it's obviously a brain disorder as these related disorders are. But when you and I talked about BDD, we did talk about some of the nurture elements, not just the nature elements. And I'm curious if you know, with ORD, are there sentinel events from the past or certain familial things or cultural things that seem to be associated?

Dr. Katharine Phillips: Yeah. You know, we don't really know. I think, based on having seen these patients, what has been published in the literature, and as you say, almost certainly, it's partially genetic and a brain-based disorder, probably involving olfactory hallucinations actually. But some people will describe having been told they smelled bad when they were young-- whether they did or not, I don't know. But sometimes that may perhaps be a risk factor or perhaps be a trigger, but it wouldn't be the only cause, right? I mean, because the cause is almost certainly very complex, a combination of genetic and environmental factors.

But I wonder if there's some overlap in antecedent life events, some overlap with those at BDD, maybe perhaps being teased or being made fun of, especially younger in life. We do have some evidence to support that for body dysmorphic disorder. We don't have that for olfactory reference disorder. But that may be you don't have the data, the studies haven't been done, but it makes sense, right? Because this disorder, like BDD, it's a lot about being rejected and not being good enough and not being accepted by others. We don't know studies of sort of the early experiences of these individuals, so we don't really know.

I mean, it's quite possible that cultural factors play a role and that perhaps cultures that emphasize cleanliness more or using deodorants. Maybe it's more common there. You know, I have to wonder as I watch next to no television, but I do ride the subways in New York City. And, you know, now we're seeing a lot of these ads for full body deodorant. And so, deodorant's becoming an even bigger thing, it seems to me, at least here in New York City than it used to be. So, you wonder, if someone who's already otherwise predisposed to olfactory reference disorder genetically in terms of life experiences, is that something that might put them over the threshold to getting the disorder, right? Might it be one more risk factor? I do wonder about that.

Dr. Daniel Knoepflmacher: The cultural aspects, I think, really is a fascinating thing to think about. And you go to international conferences, I'm really curious whether in other cultures, you've seen different prevalences for this. But also as something we talked about with BDD, with social media and focus on appearance, and now you're saying here in the culture, there's a focus on this kind of idea of cleanliness and odor, how much that might be seeping into this. And I wonder-- I'm just saying this, I don't expect that you initially have an answer, but if there's TikToks out there with people talking about their concerns about their odor, you know, it's something I don't--

Dr. Katharine Phillips: There must be, yeah. I'm not on TikTok, so I don't know.

Dr. Daniel Knoepflmacher: Nor am I, but just if someone listening out there can, you know, maybe look into this.

Dr. Katharine Phillips: Yeah. Oh, I'm sure. Actually if you google olfactory reference syndrome, which has been its name until just a few years ago, or olfactory reference disorder, you'll get lots of hits. So, on the one hand, I think most mental health professionals probably haven't heard of it, and I think most of the public hasn't heard of it.

On the other hand, some people have. And I wouldn't be surprised if there are TikToks on body odors, certainly. But just to keep in mind that it's not a new disorder that it's just caused by social media, just like body dysmorphic disorder. These disorders have been described for over a century. We have to studies from sort of case series of olfactory reference disorder describing the clinical features and that sort of thing from around the world for many decades. So from Japan, from Nigeria, Saudi Arabia, Brazil, you know, as well as the U.S. and Canada. So, it seems it probably occurs worldwide, right?

And it seems to be pretty well known to dentists actually, and that which makes sense. I don't know if they identify it as olfactory reference disorder, but perceived halitosis, that isn't really present. So, a lot of these patients actually seek non-mental health treatment, which really as best we know, does not work. And this can include going to a dentist for a prescription mouthwash or having your axillary glands surgically removed, your sweat glands in your underarms surgically removed if you think sweat is the cause of the odor that you perceive. Or a tonsillectomy, i've seen patients who've had tonsillectomies; proctectomy like removal of their anus if they think they're emitting a foul body odor or smells like feces.

So, I think a lot of these people with this problem go to non-mental health professionals actually seeking some of these treatments. And the small amount of data that we have on them, which I collected suggests that they don't work, which makes sense because the problem in this disorder isn't with actual body odor. These people don't smell bad, right? It's with a misperception, likely olfactory hallucinations, just like cosmetic treatment doesn't work for BDD, because the problem in body dysmorphic disorder is not actual appearance, right? It's distorted body image. So, we don't recommend some of these other treatments.

Dr. Daniel Knoepflmacher: Well, with this similarity to BDD, but obviously again, a different sensory pathway, a different condition. I'm curious if you could talk about the differences and similarities between treatments for BDD or even OCD.

Dr. Katharine Phillips: The treatment data is still limited, more limited than for BDD and much more limited than for OCD because this disorder is still unknown still. This is why I'm so glad we're talking about it. I mean, it has certainly existed for a very long time. It's been described around the world, but I think sort of unknown to the mental health profession for the most part.

Even though you can now code it-- I don't know if I mentioned that or you did-- we can code it now, because it's in ICD-11, which was published several years ago. And so, you can code it in your electronic medical records. So, I hope that increases recognition of this disorder. But still, the treatment data is kind of limited to case series and case reports. We don't have any randomized controlled trials. But based on what we do now and clinical experience, I think the treatment is a lot like that of body dysmorphic disorder and similar to OCD, they all have some similarities in the treatment approach. The medication approach is probably quite similar. I always start with an SRI, and because it's like body dysmorphic disorder and OCD in terms of the intrusive unwanted obsessional thoughts. SRIs seem to work for those kinds of thoughts, probably regardless of the diagnosis. And again, if I need to go to those higher doses that I mentioned for OCD, if we need to and if it's well tolerated, which it usually is. You don't have to go to those high doses, you don't. And we always want to give it at least a good 12-week trial-- if not longer. You know, four, eight weeks is not going to be enough just as for OCD.

I think an unanswered question is, do you need a neuroleptic at the beginning of treatment with an SRI or can you reserve it for down the road to add it onto the SRI if the SRI doesn't work well enough? I usually will start just with an SRI. But they're quite a few reports in the literature starting both of them together probably because of the absent insight that most of these people have, their complete conviction that they really do smell bad. We tend to use neuroleptics, also known as antipsychotics for those kinds of symptoms. And they can be very, very helpful. But they, in theory, potentially have more side effects, right? Side effect issues than something like the SRIs, which are usually very well tolerated. So, I usually just start with a serotonin reuptake inhibitor. I treat it similar to how I treat OCD and body dysmorphic disorder. And then, if the SRI alone isn't working well enough, despite reaching high doses, if I can, and if that's needed, then I will add in something like aripiprazole, the neuroleptic aripiprazole, or another similar neuroleptic.

But I think, with all three of these disorders, actually, if someone is very severely ill, and I'm worried about their suicide risk, and I am concerned they're very severely depressed, I will add a neuroleptic at the beginning of SRI treatment, and therapy of course, because I'm trying to do everything I can to reduce the risk of suicide or severe impairment. And cognitive behavioral therapy, I think, is closer to that for body dysmorphic disorder than for OCD. So, we need, I think, not only the exposure and the ritual prevention, but also cognitive strategies.

So just as an example, I like starting with the cognitive strategies actually as we do for body dysmorphic disorder, helping people recognize the errors, the cognitive errors in their thinking, which we all make from time to time, right? We all sometimes think we know what someone else is thinking or that someone's taking special notice of us in a negative way. That may occasionally cross our mind. Like, "Why did that person frown when they were looking at me?" We all can get into fortune-telling, right? "Oh no, I'm going to fail that exam." So, these are normal thoughts, but I think people with olfactory reference disorder, BDD, OCD, other psychiatric disorders make a lot of these cognitive errors and they vary somewhat from disorder to disorder. But in olfactory reference disorders, things like mind-reading, that person must be thinking, "I smell bad." Personalization is a big one. That's what the referential thinking is about, right? Thinking other people are singling you out of the crowd and making fun of you, or judging you negatively or rejecting you. So, we start with learning those cognitive errors, and then we would implement the exposure and ritual prevention.

So if you're a person, a man is avoiding class, going to class, he's a full-time student perhaps, because he thinks he stinks, his breath is really bad and he smells like sweat. And he thinks mistakenly that everyone else can smell this. If he's missing class and starting to fail his classes, we'd have him gradually start going to class without doing his rituals. And without running into the bathroom right before he runs in the classroom to apply a little extra deodorant or sniff under, you know, his armpits. We have him gradually use less and less cologne. We have him go to school more often. We have him gradually start entering social situations that are being avoided. And that's another thing that's very similar to BDD is the exposures are usually to social situations, because that's where the fear and anxiety are. It's when they're around other people and they think other people are thinking they look ugly in the case of BDD or that they stink in the case of olfactory reference disorder, which triggers a lot of shame and feelings of humiliation. So, we want to help people give up those repetitive behaviors just as an OCD, give up those rituals, and gradually go into the feared situations, gradually without any fear and be able to just live your life the way you want to live your life.

We also do self-esteem work in olfactory reference disorder, because I think using some cognitive techniques, because I think there's a lot of shame, feelings of shame and low self-esteem. And we do that in body dysmorphic disorder also. So, there's a lot of overlap in the treatments, I think, especially with body dysmorphic disorder.

Dr. Daniel Knoepflmacher: Thank you, Kathy. I mean, this is something which I know that mental health clinicians encounter and the rest of us do, and maybe haven't thought of it as a distinct diagnosis. So, it's really helpful for you to-- I know you're out there writing about this and trying to educate clinicians about thinking about this. So, I'm glad that we had this opportunity to talk about it.

Last thing I want to ask you is, for our audience listening, if you could recommend resources for people who want to learn more about either OCD or ORD, where do they turn?

Dr. Katharine Phillips: I think UpToDate is a great reference, a great source. I just wrote an article may not too long ago on olfactory reference disorder for UpToDate, because they didn't have anything on it. So, I thought, "Wow, this is an omission. This needs to be fixed." And there are great articles on OCD also on UpToDate. And many people have access to it, you know, if you work for an institution, through their electronic medical record.

The International OCD Foundation website has lots of information about OCD. One article on olfactory reference disorder, I think, maybe there's more I haven't searched recently, but that I wrote quite a few years ago. I'm quite involved with that organization. And so, we hope to add more information about olfactory reference disorder in the future.

And then, I think a good source and a free source is the Merck Manual. The Merck Manual is free online. It's translated into so many different languages. There's a professional version, there's a consumer version. It's brief. It just gives a good overview. And there's a section on the obsessive-compulsive and related disorders that I wrote with a colleague of mine in South Africa, Dan Stein. And olfactory reference disorder is included in that chapter as of course OCD is and other obsessive-compulsive and related disorders.

And then, I think increasingly we'll see more studies done of this disorder. I think it's just starting to emerge, right? Maybe it's where body dysmorphic disorder was in the '90s, and OCD was in the early '80s. People hadn't heard of it, long historical tradition. But it kind of flown under the radar. I think often because patients are somewhat embarrassed to talk about it, right? And you often have to kind of ask, look for the clues and ask them about it.

But I think especially now that is a separate disorder in the International Classification of Diseases, iICD-11, I think that's going to help a lot with its recognition. So, search on PubMed and other databases. I think we're going to be seeing more and more studies on this disorder, on olfactory reference disorder. And of course, there's plenty on OCD that you can find there. Research has always been done on OCD.

Dr. Daniel Knoepflmacher: Kathy, thank you so much. I mean, it's a pleasure having you on to talk about this because, as you've just alluded to, you've done so much work in your career to move forward our understanding of these conditions and then teach clinicians about them and get this information out there. And I have the luck of being able to work with you here at Weill Cornell so I can just ask you for advice on the fly. But to have this chance to really talk about this in depth, in this format and the podcast and have others out there learn from you, it's really special. So, thank you so much for taking the time out of your busy schedule to join me today.

Dr. Katharine Phillips: Thank you so much for asking me to be here today. I mean, these disorders cause a lot of suffering. And yes, I'm very passionate about getting the word out and I can do it by being interviewed by people like you. So, thank you. Thank you so much.

Dr. Daniel Knoepflmacher: Well, absolutely my pleasure. And, again, the fact that you can get this out there, it helps many people immeasurably. So, thank you. And also, thank you to all of you out there who listen to this episode of On The Mind today. Again, we're the official podcast of the Weill Cornell Medicine Department of Psychiatry. Our podcast is available on all major audio streaming platforms. That means you can find us on Spotify, Apple Podcasts, YouTube, you name it. This is really important.

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