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BPD & NIMH
Interview transcript for
Wayne S. Fenton, MD |
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03:43:18;04 |
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. |
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03:43:35;16 |
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. |
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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. |
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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. |
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FEATURES
OF BPD |
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03:49:22;04 |
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. |
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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. |
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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. |
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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. |
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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. |
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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. |
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BPD
INFORMATION AND SERVICE GAPS |
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03:52:43;12 |
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. |
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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. |
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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. |
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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. |
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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. |
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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. |
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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. |
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STIGMA |
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04:09:48;04 |
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. |
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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. |
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LACK OF
COMMUNITY RESOURCES |
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03:56:35;16 |
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. |
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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. |
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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. |
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COURSE OF THE
ILLNESS |
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04:03:17;14 |
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. |
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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. |
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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. |
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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. |
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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. |
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GOING FORWARD |
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04:06:25;06 |
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. |
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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. |
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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. |
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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. |
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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. |
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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. |
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ROLE OF THE
FAMILY |
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04:00:49;24 |
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. |
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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.
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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. |
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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. |
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(end of tape) |
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