Wayne Fenton Interview on Borderline Personality Disorder

Interview with Wayne Fenton (NIMH)
03:43:35;16		NIMH is a federal agency that has primary responsibility for funding research on mental illness, in reducing the burden of mental illness in the United States, and there is a fairly large research portfolio. I think the budget in FY 2004 was almost $1.4 billion. But when you look across the various disorders, it's true that borderline personality disorder has a great paucity of research relative to the burden that it places on the American public. It's a disease that has a prevalence of about one percent in the United States.
03:43:59;18		It has a suicide death rate of perhaps 10 percent and accounts really for 20 percent of all psychiatric hospitalizations in the country. Yet at the same time, if you look almost between 1980 and let's say 1995, I think there are a total of 13 NIMH grants addressing borderline personality, grossly inadequate research attention relative to the importance of this as a public health problem.
03:44:25;22		And under our prior director, Steve Hyman, and our current director, Tom Ensel, I think there has been an effort to take a look and refocus the Institute's efforts on public health issues, particularly ones that have been neglected. And this is really close to the top of the list.
03:49:22;04		FEATURES OF BPD I think it's important to recognize that borderline personality is what you would call a heterogeneous disorder, that is, all people with it are not the same. Therefore, all people really can't be treated the same and can't be expected to respond to the same sorts of treatments.
03:49:43;07		The major approach from a scientific perspective is to take the group of individuals lumped together under this term and many people argue that it's not a very good term, but take the group of people lumped together and look at the various dimensions of dysfunction that they have both in common and that also differ, one individual to the other.
03:50:06;24		When you look at people who are labeled borderline personality disorder, what you see is dysfunctions across several dimensions. One, of course, is impulse control and impulsivity. A second is affect regulation, that is the ability to manage one's emotions. There are also, in some instances, dysregulation of cognitive function, difficulty thinking, particularly in particular circumstances when the person is overwhelmed emotionally.
03:50:42;02		And finally, there are difficulties in interpersonal relationships. So when you look at an individual patient, you might see dysfunction in all four of those domains, you might see it in three of the domains, two of the domains, one, various combinations.
03:50:59;10		In approaching the disorder from a scientific perspective, we believe that these dimensions such as affect dysregulation, such as impulsivity, are really more approximate to brain functioning in brain circuits. And the research that we supported to date is beginning to provide some clues with respect to what areas of the brain are involved, for example, in regulating emotion or regulating affect and impulses.
03:51:28;20		I think the implication though, looking forward, looking really way forward, is what you would call individualized medicine, individualized assessment of the person to say what specific dimensions of functions with the underlying brain circuits are dysfunctional in this particular individual and targeting treatments, whether they're psychological treatments or biological treatments to the specific dysregulation shown by the individual patient.
03:52:43;12		BPD INFORMATION AND SERVICE GAPS I think that there is both an information gap and also, importantly, a services gap. The information gap clearly has some roots in clinicians' training. For example, when I was trained as a resident at Yale, we were taught about borderline personality disorder in the context of child development in that there were certain similarities between the emotional behavior of an 18 month old child and the emotional behavioral patterns of an adult with borderline personality disorders.
03:53:30;04		And our teachers made the remarkable but incorrect leap in teaching us that, in fact, because of the surface familiarities in these emotional response patterns that the borderline personality disorder was actually caused by some sort of trauma or some sort of failure to traverse a developmental stage at the 18 month period.
03:53:54;12		And I think that probably it might be fair to say that the country is populated with a generation of clinicians around my general age whose training was out of that sort of tradition. You know, of course, the informational gap has to be addressed first by using the information we have to develop better treatments.
03:54:24;22		I mean, this is such a difficult condition that if science yields a new treatment, clinicians are going to be interested in it because, and families are going to be interested in it, not to mention individuals who suffer from the disorder because current treatments are very substantially inadequate.
03:54:45;08		But we also need to make an effort to integrate science education into clinical training in the relevant disciplines, including psychology, social work and psychiatry.
03:55:13;12		That's an information gap. The second gap is a services gap. There are some treatments which, at this point in time, we know are effective, but actually in your community, if you want to find that treatment for someone in your family or a patient that you might be looking to refer, you'd better start very early in the morning because it's going to be very difficult to find it.
03:55:45;29		So that we also need to do a much better job of disseminating, that is, implementing at a community level throughout the country, those treatments that we already know do work for that condition.
04:09:48;04		STIGMA There's no question that there's very significant stigma associated with this disorder. I think anyone who tries to make a referral to a mental health clinician, you'll find many, many psychiatrists, social workers, psychologists simply won't treat patients who have this order.
04:10:13;06		Obviously, one of the underlying issues is that clinicians feel very ineffective when it comes to treating this and in many instances, as we discussed earlier, have not had access to some of the new tools, some of the new ways of thinking about this disorder, some of the training in some of the new therapies that are more effective.
03:56:35;16		LACK OF COMMUNITY RESOURCES The issue of the resources available, particularly in public mental health systems, is really a critical question and I think it's not news to anybody that State Medicaid and State health departments throughout the country are very, very pressed for resources.
03:56:58;07		Serious mental illnesses like borderline personality disorder are not a cold. They don't go away in seven to ten days. And we're oftentimes dealing with a model, an acute care model of care for mental illnesses that focus on narrow definitions of medical necessity, short-term acute stabilization and rapid discharge.
3:57:28;28		And while that often does work for particularly individuals with serious in-treatment-resistant schizophrenia, bipolar disorder, major depression and borderline personality disorder, the resources we have in the community just are not there to meet the clinical need.
04:03:17;14		COURSE OF THE ILLNESS There's been a few long-term studies of personality disorders. First, the studies that came out in the '80's and early '90's were sort of retrospective studies, based on patients who had been discharged from hospitals like the New York hospital or Chestnut Lodge Hospital. You found that the patients with BPD tended to, in a certain sense, the illness tended to be at its worst when the people were in their 20's and early 30's.
04:03:54;16		This is when the illness is really burning like a fire, a great deal of instability, many hospitalizations and a really difficult time. But on an aggregate level, it seemed to be that once the patients traversed this high risk period and entered their late 30's, early 40's, that the illness tended to simmer and calm down and many patients, in fact, were functioning quite a bit better.
04:04:20;10		When you looked at how it is that these recoveries came about, there were two broad patterns. One of the patterns was that some of the patients came to recognize that close relationships with other people were just too difficult for them to manage so that they almost reconciled themselves to having more distant relationships with other people and threw themselves into some other area of life such as work and became very successful.
04:04:58;18		Another group seems to have had a diminishment of some of this dysregulation that underlines the interpersonal problems but also through treatment learned to modify their patterns and, as it were, self-manage the illness. And that was a second group.
04:05:18;18		So looked at over the long run actually as many as 80 percent of the patients, by the time they were in their late 40's, were substantially improved.
04:06:25;06		GOING FORWARD I think there are really two threads of research that are going to have important implications going forward. The first is really getting a better understanding of the underlying neurobiology of these behavioral dimensions that are dysregulated in this disorder.
04:06:50;07		For example, impulsivity. When we understand the neuro-circuits involved in impulsivity and it may well be that those circuits involve the prefernal cortex exercising an inhibitory influence on lower brain centers, we'll then be in a position to develop interventions that specifically address the underlying biological deficit.
04:07:21;22		Similarly with affective instability and aggression in those sorts of dimensions of the disorder. So I think what we hope to see with a better understanding is, for example, medication treatments to tightly target these aspects of functioning that are dysregulated.
04:07:47;24		Unfortunately, the medications that we have today, when it comes to this disorder, are sort of like a blunt instrument. They will oftentimes just generally sedate the person but not have a specific effect on the underlying dysregulation.
04:08:05;02		However, we can't wait for that research to bear fruit. Patients also need something now so that while we work on the basic science underlying the disorder, we also have to work on treatments that can be implemented now and hopefully implemented at a cost that's reasonable enough to be able to be put in the community.
04:08:29;16		So that for example, dialectical behavior therapy we know from over half a dozen randomized clinical trials is really effective in reducing suicidal behavior and hospitalizations for these patients. We're now trying to disaggregate the components of this study or the components of this therapy to see if, for example, the social skills component alone would be effective or the individual therapy alone would be effective as a means of essentially finding perhaps a more cost effective way of taking this treatment that we know works and getting it out across the country.
04:00:49;24		ROLE OF THE FAMILY I think the family plays a critical role in determining the outcome. I think it's important to probably recognize and acknowledge right from the start that for many people with borderline personality, the family really is a critical social support. These are, in many instances, people who would be in homeless shelters, who would be in the back wards of mental hospitals, if it weren't for their family's continued willingness to care for them, often under very, very difficult and emotional circumstances.
04:01:24;21		So I think one has to give an enormous amount of credit to families who are able to, as it were, stay with their children who are afflicted with this sort of condition. That being the case, I think that attempting and acting as an advocate to try to help the person with BPD to access effective treatment is certainly one critical issue.
04:01:55;02		To try to the very greatest extent possible to provide a supportive environment is also critical. I think it's also important for family members to themselves become educated with respect to what we know about this disorder along with what we don't know about it. And probably as important as anything else is for families to maintain hope because this is a condition that is associated with a tremendous amount of suffering and that can engender hopelessness.
04:02:32;00		But when patients do recover and you speak with them in retrospect, oftentimes it is somebody's belief in them, it is somebody's belief that they can make it, and it's often their family's belief that they can make it that they identify as the critical issue in achieving their recovery.

Interview with Wayne Fenton (NIMH)