Understanding the science and treatment of anxiety disorders can take years of study and the commitment to conduct painstaking scientific research and countless treatment sessions with patients. In a candid interview with Mental Health News, Dr. Helen Blair Simpson gives us a unique look into the world of anxiety disorders; both from her perspective as the Director of the prestigious Anxiety Disorders Clinic at NYSPI, but also as a caring and dedicated treatment professional. We are indeed grateful to Dr. Simpson for taking the time to give our readers an up-close and personal look into the world of anxiety disorders.
Q: What is the hardest thing for you to communicate to people when they ask you to discuss anxiety disorders?
A: That’s a good place to start and I’ll tell you why. One of the reasons I am so pleased that Mental Health News has given me this opportunity to chat with your readers is because your publication helps bring vital mental health education directly to people in the community. One of my biggest challenges as a scientist, clinic director and treatment professional, is finding ways to engage patients to work with us so we can advance the science, because without participants in research studies, the science won’t move forward. In speaking with you today, I want to be helpful to people who are considering treatment. In addition, forums such as this allow me to talk about advances in the field and the latest research opportunities, I hope your readers might consider participating in research in the future and become our partners in advancing the field.
Q: What are anxiety disorders all about? Why do people get them, and what can people expect in terms of treatment and outcomes?
A: Let me start by making a historical point. The Anxiety Disorders Clinic at NYSPI was founded in 1982 and was the first research clinic in the United States, and probably the world, to focus on anxiety disorders. Before then, anxiety was rarely seen as something important to focus on because in fact, anxiety is a universal human emotion. We all have some form of anxiety, and there was almost a joking notion in the movies and in the media of regarding people with anxiety as “the worried well.” Certain kinds of anxiety are actually good for us. Anxiety can alert us to potential threats and motivate us to prepare for certain challenges we might face. However, a surprisingly large proportion of the population experiences excesses of anxiety that is counterproductive and even debilitating. What we’ve learned over the last 20 years is that this excess anxiety often takes the form of different prototypical syndromes, and these have been called the “anxiety disorders.”
So, when you speak to someone like me and say, “What’s an anxiety disorder?” I then say back to you, “Well, which one are you talking about?” Our progress over the last 20 years has been to realize that there are many different forms of anxiety disorders – it’s not all one thing. Right now in the DSM-IV (our diagnostic manual), all of the following are considered anxiety disorders: Specific Phobia, Acute Stress Disorder, Posttraumatic Stress Disorder (PTSD), Generalized Anxiety Disorder (GAD), Social Phobia (also known as Social Anxiety Disorder), Obsessive-Compulsive Disorder (OCD), Panic Disorder – with or without Agoraphobia – and that’s the list for adults. Then there is Separation Anxiety Disorder in children. In the upcoming DSM-V, there is a great debate going on about whether all of these should still be considered anxiety disorders. For example, some people are arguing that OCD isn’t an anxiety disorder – that it would better fit with Tic Disorders, or that GAD should be grouped with Depression, or that PTSD should be in its own category of trauma related conditions – with anxiety disorders being only for conditions focused on the phobias like height and social situations.
The notion of an anxiety disorder is that at its core is some problem with an exaggerated fear response. Saying that, it’s interesting in that the pharmaceutical companies choose Generalized Anxiety Disorder (GAD) as the prototypical anxiety disorder with which to test the efficacy of medications that are being developed – as GAD doesn’t usually have that prototypical fear response. All anxiety disorders share certain symptoms, but also have unique symptoms. For example, OCD has repetitive and compulsive behaviors, which distinguish it from the other anxiety disorders. Likewise, with PTSD people can re-experience their symptoms, which is relatively unique to PTSD. Social anxiety patients (not all of them) can have very profound physiological responses like blushing and sweating, which isn’t so typical of the other anxiety disorders. What is not unique is a panic attack, which is a sudden surge of intense anxiety with certain array of physical symptoms. You can get a panic attack in Panic Disorder, when it comes out of the blue, but you can also get a panic attack if you have a Specific Phobia, such as a fear of heights, and you are brought up to a high building; if you have OCD you can have a panic attack if you fear contamination and you are suddenly exposed to something you perceive as contaminated; and people with PTSD and people with Depression can have a panic attacks – so panic attacks are not unique to either Panic Disorder or to anxiety disorders in general.
We think, although we don’t know, that anxiety disorders share some parts of the brain’s mechanisms. But we also find differences among them, which may explain why the symptoms within the anxiety disorders are somewhat different. Our clinic was one of the first to differentiate the anxiety disorders. Years ago, we were also one of the first clinics to apply medications to Panic Disorder. The increasing differentiation of each of the disorders over the last 25 years has led to multiple studies demonstrating similarities and differences in what medications are useful for which anxiety disorders. For example, benzodiazepines are useful for some anxiety disorders (like Panic Disorder) but not for others (like OCD). In addition to medications, we also know that a very specific type of psychotherapy, called cognitive-behavioral therapy or CBT is effective for anxiety disorders. At this point, very specific CBT protocols have been shown in randomized control trials to be very effective for individual disorders. Despite this, there is a movement to develop one generic psychotherapy that can treat all of the anxiety disorders, mostly because many people present with multiple anxiety disorders at a time, with overlapping symptoms, and many have accompanying depression. The problem is that the patient who shows up in your clinic isn’t that “pure” patient. They may have OCD as a primary problem, but they may also have a lot of social anxiety too. So how do you take disorder-specific CBT protocols and make it work in a clinic setting? This explains the thinking within the field to develop a universal CBT program that would make things easier for clinicians in the field to use these effective treatments.
Q: In your own mind, are the anxiety disorders distinct, or is it more like a spectrum of disorders?
A: There are clear differences between the disorders, but there are a lot of gray boundaries as well. What we do know is that for each of the disorders there are differences in what medications work and do not work. Some medications work for some and other medications do not work at all for others. On the therapy side, Cognitive Behavioral Therapy (CBT) is effective in dealing with a patient’s “black and white thinking” or distorted beliefs about “risk.” The behavioral part almost always utilizes exposure therapy that in a very graduated way exposes patients to the things that they are afraid of. Here’s the rub. The way you actually do exposure therapy with individual patients differs a little bit from one patient to another. For example, with a PTSD patient who is a woman that has been sexually assaulted, you don’t ask her to imagine the assault happening 15 more times. You work with her to tell you the story of what really did happen, and try to help her realize that this was a horrible event in her life; that not all alleys are dangerous; and that not all men are dangerous. In this case, we are working to expose her to the exact thing that happened to her. On the other hand, when you do exposure therapy with an OCD patient it’s exactly the opposite. The assumption is that their fear doesn’t make sense, so you are going to work with them to imagine the worst-case scenario. For example, for someone with contamination fears who has been avoiding going on the subway, one of your exposure exercises may be to go on the subway with them and purposely make sure they hold the “poles” in the subway car. You will have them not wash their hands afterwards and ask them to touch themselves and things in their home and to imagine that they will get horribly ill and die. The point is for them to discover that their fear of dying is an irrational fear, but you do this by having them imagine the worst. So even though in both cases this therapy is called CBT, well-tailored treatment actually takes the differences between these disorders into account.
The ultimate question in understanding anxiety disorders is, “Are they different at the brain level?” There are some suggestions that there are both similarities and differences among the disorders, and that’s the way I think about them. My brain allows me to speak to you today. If I had obsessions and compulsions, my brain would be causing that. Therefore, my brain is doing something abnormal. If I don’t have obsessions and compulsions, then my brain isn’t doing that abnormal activity. I believe that the differences in the phenomenology between the disorders may actually be due to certain differences in the brain mechanisms underlying these disorders, but they may be small or large differences, and the bottom line is that we do not know yet.
Q: When somebody comes in for treatment, are they aware of what the problem is? For example, do patients comes in for their first appointment and immediately say, “I am terrified of leaving my house,” or, “I can’t stop washing my hands”? Do they usually come in with these exact complaints or do they present in some other way?
A: We see everything. We see people with OCD who don’t know what they have. Many are terribly ashamed of their symptoms because they don’t realize what it is. People with OCD have obsessions and compulsions, but the content of their obsession and compulsion can really vary. In one version of OCD people have intrusive fears that they may do something bad or might even have intrusive images of doing something bad – really bad things like killing their mother – which these people don’t want to have at all. In the past, people really thought these were their real desires and were afraid to tell anyone about them because they were so awful. Back in 1996 our clinic was often diagnosing OCD in patients who knew they were depressed and knew they felt anxious but didn’t really know what was going on with them. They were often terribly relieved to learn that there was a name for these awful thoughts (i.e., OCD), that other people had thoughts like this, and that there was treatment.
Today, there has been an enormous shift which I credit to publications like Mental Health News, public education campaigns, and the internet, that have been very helpful in providing useful information about anxiety disorders. More people come to us today who have actually done a lot of research on their own to try to understand what’s going on for them. They will come into our clinic and say that they think they have OCD or PTSD and so on. The self-diagnosis is not always correct, but there is a lot of information that helps people overcome their fear and anxiety about seeking help.
It’s really important for clinicians in the field to understand that anxiety disorders may lie below the surface of some of the more overt conditions they see in their patients – such as depression for example. If they are seeing anyone with depression, they should ask their patients about anxiety in a very detailed and clear way, because they often go hand-in-hand. The notion that the depression is more important than the anxiety “so let’s only treat the depression” is a mistake. Anxiety can be horribly severe and incredibly debilitating, and it can be present with depression, schizophrenia, bipolar disorder and so on. OCD can also be found alongside Autism Spectrum Disorders. We tell the residents at Columbia University Hospital to be aware of anxiety disorders when they are seeing anyone with mental health problems.
The National Comorbidity Study (NCS) done in the U.S. by Ron Kessler up at Harvard, as well as many collaborators, gave us some of the best data we have on the prevalence of psychiatric disorders. If you add up all the anxiety disorders, the lifetime prevalence is 29%. That means that almost a third of all adults in the US have an anxiety disorder. Now 12% of these adults have specific phobias. Often, people make light of this diagnosis. Certainly, if you have a fear of snakes and you live in NYC, it isn’t usually a big deal. However, I have colleagues who are afraid to fly and can’t get on a plane to attend conferences in other cities or who would be unable to fly to see a sister as she is dying. They have to take a train to get across the country or get on ocean liners to go to Europe.
I saw a woman in the hospital who had a pill phobia. I met her on the cardiac transplant unit where she was being treated for end-stage congestive heart failure. She was on the waiting list for a heart transplant when an observant nurse on the unit noticed that she wasn’t swallowing the pills they were giving her. That led to them calling in a psychiatric consultation which determined that the woman had a pill phobia her entire life and had never actually taken any of the pills that had been given to her all along. No one had ever detected it or intervened, and now she was in end-stage heart failure because she had not taken any of the heart medicines that were prescribed for her years earlier. So the lesson here is that specific phobias (which many people dismiss) can actually be quite disabling.
The NCS pointed out that Social Anxiety Disorder is one of the next most common anxiety disorders. These are people who usually do not make trouble for the world because of their tremendous social inhibitions. However, they are people who can’t advance in their life because of their terrible social anxiety. OCD, on the other hand, is the least prevalent anxiety disorder at maybe one to two percent. However, 50% of OCD cases are severe and 35% of the cases are moderate, and they have a typically chronic waxing and waning course with half the cases of OCD starting by the age of 19. So if you add all that up: chronicity, prevalence, and severity, you can see that OCD is one of our most disabling mental illnesses that get people off track early in life. Once off track, it is very difficult to get them back on. The point is that anxiety disorders can range in their severity. What keeps me motivated is my belief that these are disorders we should be able to treat, and when you can treat people with these disorders, they can go on to live full and satisfying lives. When it works, treatment can transform a life.
Q: Are anxiety disorders a hallmark of all the other mental illnesses, and do they have their roots in childhood?
A: Yes, many of our anxiety disorders start in childhood and adolescence, such as specific phobias, separation anxiety, OCD, social anxiety disorders, and generalized anxiety disorder (which used to be called the over-anxious disorder of childhood). PTSD is the one disorder that requires a specific environmental event or trauma to trigger it, so it can unfortunately happen to anybody at any time. The data show that when any of these appear early in life, our normal development can become derailed.
We all go through different stages in our life. All of us go through a cycle of life that includes important things we learn in childhood and in adolescence. In young adulthood we usually master our autonomy from our family of origin, figure out our new partner, and our career path. Imagine how having any of these anxiety disorders in childhood or adolescence might disrupt one’s normal developmental milestones. For example, someone with a social anxiety disorder who never dates in high school and has very few friends arrives into their 20s without important social skills that most of us have learned by that point. It’s a terrible problem with OCD when people hide their OCD from others in the world around them. Maybe that person can make it to college, but they don’t make it through college – or maybe they don’t make it from moving out of their parent’s house.
I met a 39-year-old woman who had never dated in her life. Now, she’s seeing all of her friends married with children. Today, she understands her OCD and her symptoms, has been treated, and is doing much better overall in her life. However, she looks at her life and realizes that she is in a job that she doesn’t like because she didn’t dare take promotions because of her OCD. She has never dated, and the likelihood of her ever becoming married and having children is now very low. These losses are very difficult to give back to people. The more I work with adults, the more I have a sense of the importance of treating anxiety disorders early, when they appear in childhood and adolescence.
The ultimate question is whether we can actually prevent these disorders if identified and treated early. Through early detection and intervention, can we prevent people from having an anxiety disorder later on in life? And, as you asked in your question, can we prevent people from getting other disorders later on?
There is some data that indicates if anxiety disorders are treated in childhood, depression may be prevented later. There is some very interesting work with prodromal (in its earliest stage before it even fits a conventional diagnosis) schizophrenia where up to 25% of people with schizophrenia or schizoaffective disorder will also have either OCD itself, or OCD symptoms. A completely unanswered question is if those symptoms arise early, what happens if they are treated then? Can early treatment change the course of any of these disorders – we just don’t know. The new research looking at prodromal schizophrenia finds that there are tell-tale signs in people who are likely to go in the next 2-5 years to be become floridly psychotic. If we could figure out which people have a high likelihood to have that problem, could we do something before they have that problem to prevent it? If we borrow this idea from schizophrenia research, can we identify kids at risk for developing an anxiety disorder and if we can, can we intervene and prevent it from developing?
I would be very interested to follow kids at risk over time to see where the earliest glimmer of a future anxiety disorder appeared. Many kids go through a period of when they are scared of the dark, have intrusive thoughts about intruders, or are overly checking the sidewalk, and so on – but children usually go in and out of these phases. Let’s say you found someone who is going to get OCD at age 19 in a very dramatic way. What did they look like at age six, eight, or at 12 years of age? If you could work with them in childhood – if their trajectory was towards getting that illness – could you intervene to prevent it or at least make it much milder than it otherwise would be? It’s a different way of thinking about illness. One way is to see a person who is absolutely fine and then suddenly an illness hits. The goal here is to find a treatment for the illness once it develops. Another way is to see a person who is at risk for an illness; the goal here is to find out what sets them up for an illness in the first place; and to understand why that illness finally appears years down the road and to intervene early. That’s the notion of “prodromal.”
I am not advocating the idea that if we could detect the early glimmer of later disorders that we would throw medications at children. Rather, could we give children cognitive behavioral interventions? Let’s say you have a child that looks very anxious throughout elementary school, but they don’t have a disorder, so they don’t need an entire treatment regime. Since you already see that the child is anxious why not begin helping them develop flexibility around their anxiety so they don’t have to start avoiding situations and get stuck in that anxiety? You could also then work with their parents to develop a family environment that might help protect the child from going down an anxious pathway.
Q: Is it difficult for parents to spot early warning signs of an anxiety disorder in their children?
A: Some parents are very aware. Some parents who have suffered with anxiety disorders themselves are very attentive to these issues in their children and are very proactive in alerting us. Unfortunately, some parents who have suffered themselves feel guilty and think “Have I passed this on to my child – have I given them bad genes – are they destined to get my illness?” To me that’s very sad, because the parent is suffering twice – for themselves and with worry for their child. The positive side of this is that they know what some of the early warning signs are and if they have been helped by the mental health profession in the past themselves, they are less worried about bringing their child in to early intervention for help, and they are usually less concerned about stigma. Other parents that have no experience with anxiety disorders or have it themselves and have never had it treated, can actually be very frightened of seeing this in their child, and don’t often come into the clinic as often as they might, for a whole host of reasons. It might be that to have an anxiety disorder diagnosed in their child may mean it then becomes diagnosed in them. And then there are those parents who don’t believe treatment can help or that if they bring their child in, someone will insist that their child be placed on medications. In fact, the first line of treatment for anxiety disorders in kids is Cognitive Behavioral Therapy (CBT) which can be highly effective in many children. I would argue that if CBT isn’t enough for your child and your child does need a trial of medication – if it helps keep your child in school with friends and going through normal developmental stages so they don’t go off track – you need to balance that against the concerns you have about medications – some of which can be very safe.
Q: Is Attention Deficit Hyperactivity Disorder (ADHD) in the spectrum of anxiety disorders?
A: That’s a very interesting question. I teach an anxiety disorders class and the school came to me and said, “We have no place to put our ADHD class… could we add it to yours?” At first, I thought that seemed a bit silly. Then I realized it was brilliant. In children that can’t attend (listen or watch carefully), one of the reasons is ADHD, another is depression and the third one is anxiety. Most of us when we are anxious tend to tune-out when someone is trying to explain something to us during that anxious moment. A little anxiety encourages us to study for the exam the next day; too much anxiety prevents us from actually attending or focusing. There is often that differential in children. In particular there is a specific relationship with OCD. In OCD the typical age of onset is sometime in adolescence, but there is a tendency for boys to have an earlier age of onset in general and girls to have it sometime later. In boys there is often a triad that is tic-disorder, attention deficit disorder, and OCD. Sometimes they are all present together. Whether ADHD is a particular subtype of OCD with a slightly different neurobiology and a slightly different genetic basis is an area that some people are studying very aggressively. In OCD there is a particular relationship with ADHD. We find that it becomes a problem when you want to do CBT because the main treatment for OCD is a prolonged exposure, and if you have trouble sticking with something or attending, it can be very hard to do that type of treatment which requires a sustained focus.
Q: Can you tell us about some of the research studies you are now conducting at the Clinic?
A: We study all the anxiety disorders at the Clinic. The Clinic is a complete research facility. We do not charge patients for anything and all of our work is funded by foundations or the NIMH – and now the Department of Defense, which is very interested in studying PTSD because so many of our returning veterans have PTSD.
Right now, we have very active programs in the area of OCD and PTSD. For the last 5-10 years we have been doing a lot of studies that compare medications to psychotherapies; developing novel psychotherapies; figuring how to augment medications to make them work better and comparing medications or psychotherapy as augmentations. In addition, there is a group of us who have become very interested in finding out how to get important treatment breakthroughs (both the medications and the therapies) into community mental health clinics across the country and out to real clinicians in the field. That type of research is called “services research.” There are a number of studies going on at our clinic by my colleagues Drs. Roberto Lewis Fernandez and Carlos Blanco, specifically finding ways to get these treatments out to minority populations which have historically been under-represented in research trials.
Another group of us, including me, are looking at understanding “brain mechanisms” of certain anxiety disorders. For the patients of today, we are using clinical trials methodology to figure out what are the best ways to use our current treatments and what are the best ways to combine and improve them. For the patients of tomorrow, the goal is to develop even better treatments than we have now that are based on a better understanding of the brain mechanisms. With OCD, for example, we are investigating the brain mechanisms underlying obsessions and compulsions by conducting brain imaging studies and comparing neurocognitive function in those with and without OCD. The hope is that if we really understand what generates these abnormal symptoms at the brain level, we may be eventually able to devise novel or better treatment strategies for patients in general. The “Holy Grail” here is to tailor treatments to individual patients because we know that not all patients are the same.
We are now actively recruiting patients for a study we are doing in collaboration with the University of Pennsylvania funded by the NIMH. It is for people with OCD who are on a serotonin reuptake inhibitor at the maximum dose they can tolerate but who still have significant symptoms. Patients in the study receive either another medication or CBT and are carefully followed for up to eight months – a duration of treatment that can be hard to find or to afford in private practice. If they do not respond to one treatment they are offered the other, with the hope that one of the two will help them. We invite people who are on a serotonin reuptake inhibitor and still have symptoms and are considering additional medication or CBT to come to our clinic in NYC or to our collaborating clinic in Philadelphia, and we’d be happy to see if we can help them get better. For more information about this study, people can go to our website (www.ocdproject.org) or call Rena Staub at 212-543-5380.
Q: What message would you like to leave with our readers today?
A: I think there is a lot of hope for people that suffer with anxiety disorders. There has been a period during the last 5-7 years where a lot of effort has gone into more basic research. I am really hopeful that over the next 5-10 years that this research is going to really pay off. I believe we are about to learn a lot more about the role of genes and the impact of the environment on anxiety disorders, and we are developing new treatment options for disorders like OCD and PTSD and social anxiety disorder.
Helen Blair Simpson, MD, PhD, is Associate Professor of Clinical Psychiatry at the College of Physician and Surgeons of Columbia University and the Director of the Anxiety Disorders Clinic at the New York State Psychiatric Institute. The clinic can be reached at 212-543-5367. Information about Dr. Simpson’s research on OCD can be accessed through the OCD Research Clinic website: www.columbia-ocd.org.
Dr. Simpson’s research program focuses on how to improve treatments for people with obsessive-compulsive disorder (OCD) so that they can live productive and meaningful lives. Her research is interdisciplinary. It ranges from treatment development studies to clinical trials examining the effects of medication and cognitive-behavioral therapy to brain imaging studies exploring the brain mechanisms of OCD. Her work has been funded by the National Institutes of Mental Health and private foundations like the Obsessive Compulsive Foundation and the National Alliance for Research on Schizophrenia and Depression. She was a member of the workgroup that developed the first Practice Guidelines for the Treatment of Patients with OCD for the American Psychiatric Association. She was invited to present her interdisciplinary research to the National Advisory Mental Health Council of the National Institutes of Mental Health.
Dr. Simpson graduated from Yale College with a BS in biology. She then entered the MD-PhD program at The Rockefeller University/Cornell University Medical College. For her PhD, she studied the brain pathways underlying learned versus unlearned vocalizations in songbirds. She then completed her internship and residency in psychiatry at the Columbia-Presbyterian Medical Center/New York State Psychiatric Institute. Dr. Simpson has been associated with the Anxiety Disorders Clinic since 1996, first as a National Institutes of Mental Health Research Fellow under the mentorship of Dr. Michael Liebowitz, and then as an independent researcher and Director of the Obsessive-Compulsive Research Program.