Implementing Early Treatment of Psychosis — RAISE Connection

Lisa Dixon, RAISE Transcript, NIMH Alliance
for Research Progress, 2-7-14 Hi, everybody. Good afternoon.
Thank you for the invitation, Dr. Insel. I’m really —
it’s been such a privilege to listen to the talks of the
morning and also to listen to the dialogue. And I was
also glad to hear Valerie invoke Dr. Fenton, Wayne
Fenton, who really is one of my heroes and one of my
mentors. And with his kind of vision and heart that
everything that we do in research should be to serve
people who are living with mental illnesses. And so, if
I could’ve come up with a different name for this talk,
it would’ve been from “Eighteen Years to Eighteen Months: A
Celebration of Wayne Fenton.” So I’m going to be telling a story, the story
of RAISE-IES, recovery after initial schizophrenia episode, our project in New York and Maryland,
and how it went from being a research project to being
a reality in the States of New York and Maryland.
I’m going to start — I usually have to do disclosures, and so I don’t have any conflicts
of interest to disclose. I’m a New York State
employee; therefore, I have no conflicts. But I do have
an important alternative disclosure, which is
that in another life I’m an advocate. I am a family
member. I was an exceptionally cute child as I think
you would all agree.
(Laughter.) DR. DIXON: I have major chapped lips in that
photograph. But I have — I’m a family member. I have
a brother with schizophrenia, and I share that whenever
I talk about this topic because I think it is important
to make it real. And the best way for me to make it
real is to talk about how it’s real for me. And every
time I talk about it, as many times as I’ve talked about
it, I do feel my voice start to quiver a little bit.
My brother, who is the number four of five —
four of six — I’m five of six, a large family — was a
medical student actually when he developed schizophrenia. And I’ve thought about what
his duration of untreated psychosis is. It’s probably upwards
of three years. I’m not sure. We don’t know exactly
when it started. I can tell you that it started
probably before he entered medical school because I
inherited his books, and I saw his scribblings in the margin.
And so, you know, when I think about why I’m here, it is in part because what happened
to him and to our family should never happen to any other
person or any other family. And I would extend, you
know — the duration of untreated, fill in the blank.
But in our particular case, it was psychosis.
And I believe, and this is just my belief, and
I’m going to take off my science hat and I’m going to
put on my heart hat, that had he not suffered for three
years and been beaten down with failure and absence of
any kind of validation and treatment for that period of
time, had he not experienced that, his outcome might’ve
been a lot better. I don’t know for sure. We can’t do
a randomized trial or a controlled trial in our own
lives, but it is sort of that sense that, you know,
really propels me forward here. So one other photo, and I put this photo in.
I actually really like the photograph, but what I really
like and what draws my attention is this little image of
the tickled foot. And there’s a lot of ways that I can
sort of riff off that image or that part of that
picture. But for this particular audience, what I want
to say is this, that I’m going to be telling you about
early intervention and its promise. But in schizophrenia, you know, this complex human
interaction, social interaction, is something that I believe
is potentially lost.
It’s part of this sort of very nuanced social and emotional, sexual potential interaction.
And that we do have great treatments and we do have
great promise, but what I want to point out is that
I think we still have a long way to go with basic research
and other treatment research, that what I’m about
to share with you, I don’t want you to think that it
means that we have the answer. Far from it. And that
in order to sort of really understand human interaction
and some of the complexities of illness, like schizophrenia,
I really do believe we need to do a lot more
research to sort of layer onto the kind of treatment approach
that I’m going to be describing. We need to have
sort of better technology.
So with that as an introduction, I’ll be covering the big picture RAISE Connection,
why commit to first episode of psychosis services, implementation,
questions, and challenges, and then next steps. So this
slide is kind of going to lay out the rationale for
first episode psychosis services. Each of the steps that I point to has a lot of research which
is contributing to it, but I’m not going to go
in detail over any of it, just kind of trying to lay
out the big picture.
So we know in general that there’s under treatment of mental disorders in youth, and
that the under treatment or non-treatment of psychotic
illness is operationalized as the duration of untreated
psychosis. So the verbiage gets a little confusing, but,
again, the non-treatment of psychotic illness has
been flipped into the duration of untreated psychosis,
and you need to kind of remember that DUP. You’ll hear
that a lot. And the DUP, or the duration of untreated
psychosis, is the onset of psychosis to the delivery of
criterion treatment. And in the literature — and so
when Dr. Insel refers to what we know about the duration
of untreated psychosis in the United States, that
generally refers to criterion treatment as four weeks or
so of antipsychotic medications. Okay. So when you hear two years, three years, what
that means is on average from the onset of substantial
psychotic symptoms, not transient psychotic symptoms, but, say, psychotic symptoms lasting a week
that has an impact on functioning to, say, four weeks
of antipsychotics.
We know from a fair amount of literature that shorter duration of untreated psychosis or,
flipping that around, a more rapid pathway to care,
is associated with improved outcomes. We don’t know that
it necessarily causes improved outcomes, but
we know there’s very strong association. And we also
know from a lot of international literature, and increasingly
literature in the U.S., that specialized early intervention services, EIS, are superior to
usual care for individuals with first episode psychosis
while care is being delivered. So let me sort of expand
on some of the phrases I’ve used.
When we say “first episode psychosis,” that can be defined variably. It typically doesn’t
mean the actual first episode of psychosis. So if,
for example, another definition would be someone who is
within a year of the onset of psychosis, and within that
year someone could’ve had, say, two psychotic episodes.
But first episode psychosis has become shorthand for
early in psychosis, okay? So it’s just important to
understand that. People are like, is it the first episode?
No. Think about it as early in the onset or in
the trajectory of a psychotic illness.
And while care is being delivered, and what I
mean by that is that if a person receives — we know
that while a person is receiving these specialized early
intervention services, we can be pretty confident that
outcomes are better. But the real question that I
believe has yet to be answered satisfactorily is whether
those benefits persist, and that’s one of the really
important research questions that I think we’ll be
looking at over time. But while the services are being
delivered, and we’ll talk a little bit about what those
services are, we can be pretty confident that outcomes
are improved. So if we put these two things together, we
put these two findings together, our goal is both,
on a population basis, is both to reduce the duration
of untreated psychosis and to provide early intervention
services to promote long-term recovery and reduce
disability. And they’re not exactly the same thing. So I’m going to talk a little bit trying to
sort of tease that apart. So let’s talk about, in order
to understand these things, we have to sort of look at
the pathway to care. And the way that I think sort of a
cartoon or a diagram of this is represented here. So we
have the onset of symptoms, or in this case psychotic
symptoms, and then we have help seeking. And help
seeking doesn’t always happen right after the onset of
symptoms, especially for stigmatized disorders, like
psychosis. Then there is the step from help seeking to
referral to mental health services, but mental health
services are not the same as early intervention services. So there are these sort of four
steps. So what typically happens now in the U.S.?
We have — our current system are these young
people, and they’ve experienced the onset of psychotic
symptoms. They’re subjected to stigma, lack of knowledge.
That was a big issue in my family. We didn’t know
what it was. Distrust or insight, insidious onset,
and that list is a lot longer. I just put in some examples
of things that inhibit help seeking.
And then, from the point of help seeking in our complex, chaotic system, there’s rarely
an easy march to services. Sometimes there’s a requirement
for referral. There’s lack of access. There’s
unaffordability. There’s inefficiency, and again, on
and on. So what typically happens or often happens is
the police might be involved. The police were involved
with my brother, not because he was violent, but because
he was just drinking water excessively, and we were
afraid of getting him — we couldn’t get him to care.
Then there might be a visit to the emergency room in an inpatient unit, and then you might
get to a mental health clinic, but in most cases not
an early intervention service. And then very typically,
you’ll get drop out from care because this group
of individuals — well, we’ll get to some of the reasons
for it, but drop out from care is typical. And that individual
may never have received criterion treatment in
spite of the fact that they’ve been in mental health services.
The alternative, and I have to say I made this
slide — I presented this a couple of times to some of
my peer community, and I was reminded actually that an
alternative problem is not drop out, but long-term dependence on the mental health system, equally
undesirable outcomes. So what’s the vision? The vision, if we think
about this as time, is to have — you know, we have help
seeking, and then we want referral to special early
intervention services, and we want to compress that
time. So that’s the vision. So then here comes RAISE, and RAISE was a
blessing to us. It was a partnership between the States
of Maryland and New York and the NIMH, and that
partnership that was built into the process to the
proposal from the beginning, I believe, is critical to
this transition from years to months because the
foundation was set right from the beginning of the
research study. And actually before the study even
began, it was from the preparation and the planning for
the proposal. And so, without, I think, the State, the
academic partners, and NIMH all in it from the
beginning, what you’ll hear about would not have
happened. So our study is an impact study. And the
goals of that study were to observe outcomes over time of persons within two years of the onset of
schizophrenia type illness. So again, not necessarily
first episode, but early psychosis, enrolled in an
optimized intervention, the connection team, on primary
measures of social and occupational functioning and on
total symptoms and secondary measures of variety, and to
assess mediators and moderators, of course. And you’ll notice that we place social and
occupational functioning four symptoms, and really the
focus of RAISE was on disability and functioning. And
this really, I think, emerged from listening to, you
know, the consumer community and the patient community
in an effort to be much more person-centered and
patient-oriented. We also were able to conduct a qualitative
study, and this is a key part of the implementation effort, to investigate and document engagement
and satisfaction factors regarding RAISE-IES and
the connection team services. And this is especially
important because remember I had that square about drop
out from care. One of the major problems in providing
services to these young people is that they don’t identify themselves as a mental patient with
a serious mental illness. They view themselves as people
who have just experienced something. And so, to the
idea that they’re typically going to be interested in
coming to the doctor’s office and getting their prescription
doesn’t happen that way. And so, the challenge — one of the main
challenges is to sort of figure out how to enact a
treatment that sort of redefines treatment in their
eyes. Our version of treatment is not what they want,
and so we need to reinvent treatment — reinvent and re-
present treatment so that it’s something that these
folks would want. So in terms of the qualitative study, we got
information from the clinicians, from participants, from
family members, and also from referrers and administrators to really try to get a full
picture of what is successful, and, importantly for an
implementation study, what’s possible. So if we go to the actual intervention, I’m
not going to describe that in great detail, but what I
will say is that it’s very much based on the international literature on what we know about
what works for early intervention. And it’s really
in some sense built on — it’s like bits of evidence-based
practices aggregated into a whole team-based model. The
governing principles are that limiting disability is the
essential focus, and a fundamental assumption is that
disability is not just sort of a biological process, but
it’s actually influenced by treatment and environment;
that recovery is possible, and that recovery actually
should be the mode, and that it’s not the exception.
And then shared decision making is really if
you think about the treatment process, that it’s all
built around decision making, because, again, this
notion of young people who are needing to learn who we
want to empower to manage their illness, and whose
preferences we need to respect if they’re going to stay
in treatment with us. And so this is kind of a schematic of the
intervention. As I mentioned, it’s all built around
shared decision making, which I can tell you is a little
scary to do at times with people who have very
significant symptoms, and delusions, and hallucinations. , And that’s why it takes supervision and support
for the clinicians. And there’s outreach and engagement
that sort of cuts through because, again, there’s
this kind of loose affiliation with treatment that sort
of have to keep trying to sort of tighten that connection.
And then the components include evidence-based
pharmacologic treatment, support and employment in education.
And this is probably — if I had to list one thing
that would be the most important part of our engagement,
it’s the availability of help with school and work,
recovery skills, which are basically cognitive behavioral
approaches to skill building, family support and
education, central, and suicide prevention. So it’s really interesting to me that, again,
this notion that I’ve heard today about all of us in the
mental health community needing to advocate together.
Psychosis is not on the edge. Psychosis is right in the
middle. We’re at the table with the need to kind of
support all of these kinds of aids. And the idea —
then the notion is that that leads to recovery, and then
an interaction, which I think we’re still trying to work
out, as I’ll tell you with this notion of peer support
, and how we pull in the peer community. The
program itself, as we implemented it, included two
point seven FTE for about thirty individuals.
Okay. So we did this. We did with the State. And after the conclusion of the program, the
State — actually both States — jumped in and said
we’re going to continue. We’re going to continue this
program. We’re not only going to continue this program,
but we’re going to expand this program. And so, we re-branded
the New York program as On Track New York, My
Health, My Choices, My Future. You don’t see “my psychosis
treatment” in there. So like I say, we really, really
thought a lot about the words, and we listened to our
stakeholders, and we listened to our family members, and
we listened to our consumers say, well, what will — and
actually we did this at the beginning of RAISE. We had
focus groups at a stakeholder meeting. And here’s our positioning statement, and
the fact that I even know it’s a positioning statement
tells you that I’ve learned something about branding.
On Track New York is an innovative treatment
program for adolescents and young adults who recently
have had , unusual thoughts and behaviors, or who have
started hearing or seeing things that others don’t.
On Track New York helps people achieve their goals
for work — for school, work, and relationships. And again,
you don’t see the psychosis word in there, you
don’t see the — nothing really medicalized, which isn’t
to say we don’t talk about psychosis and we don’t talk
about symptoms, but we don’t lead with it. We don’t
lead with it.
Here’s some of our materials that we use for communicating about the program. And what
I’m going to show you now, I want to call your attention
to again. On Track New York helps people achieve their
goals for school, work, and relationships. I want to
show you another tool that we developed as a part of
RAISE. We call them our recovery videos. We use them
for training. We use them for outreach. We use
them for education. And so you’ll see, again, just
a follow-up on the emphasis that we’re making on school
and work. (Video Presentation.)
DR. DIXON: So that wasn’t scripted. It was just — we didn’t have to search high and
low for him, , and he doesn’t have to be the exception. I
will say that if anybody wants, we have these videos.
There are about twenty-four of them, and they emphasize
— they’re usually only like two to three minutes. They emphasize
all different aspects of what we’re trying to
promote, everything from you can change your doctor
if you need to, to how to deal with substance use, how
to deal with symptoms, medication taken, so that’s all
available publicly. I just thought would tell you more
about what we’re trying to do than going through lots
of graphs and figures.
So where is On Track New York right now? We have four demonstration sites of our full
model activated. One is in a city hospital. One
is at a big private not-for-profit. One is in a State
hospital, and the other is in a small non-hospital affiliated
private facility in Westchester. And our goal is to
provide technical assistance and training to other
sites and agencies seeking to provide care for individuals
experiencing early psychosis and to develop the network
of knowledge and experience. And most recently, sort of as a part of this
, whole, I think, in some sense perfect storm
— good storm — the city has passed a new regulation,
a new amendment of the Public Health Law, such that
every person with a first episode of psychosis who
is admitted to a hospital in New York City without any
prior treatment will be reported to the City Department
of Health. And that report will trigger an offer
of a bridging program to that individual and their
family, a bridging program that will — the goal of
which is to help that person receive follow-up care. These
individuals are free to decline the offer, and the names
and all of the identification — all the identifying information will be expunged after thirty
days, so there’ll be no permanent record of this.
But this is a really big deal, and so the City
will be expanding their first episode capacity along
with this program. In addition, there’s going to be
expanded training throughout New York State at State-
operated facilities as a part of the overall effort to
close State hospitals and develop regional centers of
excellence. And as well as the State shifts to managed
care, the requirement for evidence-based first episode
, services, there’s attempts to build it into
the requirements for managed care companies will
be assuming the responsibility for Medicaid services.
So it’s all literally happening right now as we speak.
In Maryland where I was for twenty-three years, at the
same time or slightly after New York State was
developing the On Track New York Program, it has also
developed an early intervention program. Again, and I
want to emphasize, you know, builds on the foundational
experience of RAISE. And the goal of the Maryland EIP
is to reduce chronicity and enhance the likelihood that
a person with early signs of psychosis will be able to
manage their illness, move successfully through the
appropriate developmental stage of growth, and establish
a life of their choosing. And the MEIP is a little bit different, and
I think actually in some ways broader and a
little bit more coherent in the sense that it’s taking
a public health perspective, really addressing both
the prodrome or individuals at risk through people with
first episode psychosis. There’ll be an outreach and education
arm, clinical service arm, and a regional early
intervention , learning collaborative arm. And then the idea
is that they’re going to imbed research in each of
these components. So this is all like the great
master plan, you know. The devil is always in the details
and the implementation, but this is the vision.
And the early learning collaborative teams, which will be New York and Maryland, are working
together. And we hope to be able to share what we’ve
learned with other States. We’ll be training these
evidence-based teams, and, you know, creating learning
opportunities, shared learning opportunities, across the
States, and hopefully really, as I say, the region. So
that’s kind of from RAISE, to On Track New York, from
RAISE to the Maryland early intervention program. So if we step back, why did this happen? I
mentioned RAISE, but, you know, maybe we can break that
down a little bit. What did States learn from the RAISE
Connection Program? And I’m going to walk through each
of these items in turn. So first, there was the successful creation
of multidisciplinary teams. The States could
do it, okay? And as a part of RAISE, we developed tools
to monitor , the fidelity and the — essentially to monitor
whether we did what we said we were going to do. And
I’m just going to show you some of the tools that we
created, which again will be useful, we hope, nationally.
So here is a way to kind of monitor this. So
here, expectation one, teams maintain a caseload small
enough for intensive individualized services while
serving as many clients as possible. So these programs
are not meant to be, you know, One hundred to one hundred fifity to one. Not
going to happen and get the outcomes. So how can we monitor that? Well, we’ve
created a way to solicit caseload size simply, and then
we lay it on a grid to assess the adherence to the —
essentially to the fidelity indicator. And what you see
here on the left is how our teams in Maryland and New
York did over the lifetime of the study on average, and
this is just the last three months. And you see here
that they did not exceed the maximum caseload size, nor
did they significantly under perform. Here you see full team meets at least weekly,
and these may seem very simple, but when you’re trying
to bring something to scale, these are the kinds of
, really basic things you have to monitor because
if you don’t watch, suddenly that weekly team meeting
is going to turn into a yearly team meeting. And anybody
who has a family member in the system for a long time
knows the risk of that. And so, here again you see meeting
expectation. Intake occurs within one week of referral,
so here you see again actually the New York team’s
exceeding the expectation of eighty percent. We don’t
expect it all the time, and Maryland is slightly under
shooting. But again, here this actually speaks directly
to the duration of untreated psychosis, that we don’t
want referrals happening, and then a year to pass before
these individuals get enrolled. And again, another indicator of a well-
functioning team is that teams see clients in the field
as needed. And again, here we set a threshold that at
least ten percent of the individuals should have at least
one service in the field, and you see that the teams are
way exceeding that expectation. And actually in terms
of how we might want to move this forward, maybe the
expectation should be a little bit higher. But again,
, this is sort of part of the process of bringing
a service to scale within eighteen months, not
eighteen years. If we had years, we could fine tune every single
indicator, but we don’t have eighteen years. We have
months. And so, we have to kind of do a little bit of guess
work. And here you see, you may be wondering, you
know, how intense is this service. This slide shows you
the mean number of contacts for each client over each
quarter, three months of service. And you see here at
the beginning the first three months, there’s about
contacts. And that gradually declines over the two
years of the intervention, which again makes sense.
There’s a higher level of acuity. And then what I’m
going to show you is that this reduction in service
utilization does not translate to lost outcomes. It
actually translates or maps onto persistence in work and
school. So recruitment, what did the States learn?
Was recruitment feasible? Yes, it was feasible. And
here again, I’m going to show you the diagram for the
pathway to care. And I would say that on the whole, our
RAISE effort more or less focused on the point of the
, pathway, which is after help seeking, but
before referral to early intervention services. And
actually the international literature suggests that
intervening here as opposed to the period between the
onset and help seeking is actually more fruitful in reducing
the duration of untreated psychosis.
We still have to work here. We have to do work from the onset to help seeking, but there’s
huge, huge delays within mental health services,
even in countries where they have early intervention
services as a standard. So we’re really working within
this block to get people to early intervention and to
reduce the duration of untreated psychosis. What did
we do in RAISE connection? We leveraged existing relationships.
We sought out mutually beneficial relationships for
cross-referrals. We used technology, and that, you
know, I think, as we heard today will be increasingly important. We had to do a lot of training
and re- training of providers and really connecting
with the community.
What you see here is where our referrals and our individuals who are enrolled came from.
And I think , this is sort of the good news and the bad
news. The good news is we had a lot of referrals. We
certainly enrolled — we could’ve enrolled — if we
had more slots we could’ve enrolled many more people. And
our referrals were largely from inpatient and
outpatient mental health. But I think, again, where we
want to go and where Maryland and New York are looking
is to try to increase our referrals from the community,
from the schools, from the churches, from community
organizations. I think I’ll skip this because I’m going a
little bit slowly. So what else did we learn from RAISE? We
learned that engagement was effective. What we did
worked at keeping people in the program. And remember,
the modal situation, the modal outcome is drop out, all
right? In these programs, participants remain patients
of the teams for ninety-one percent of the total possible time
they could’ve been receiving services. Our median time
of engagement was one hundred percent. And only about ten
percent of the individuals who we enrolled were patients
for less than half of the time that they could’ve been.
, So what that’s telling us is that when we
were enrolled — when we got people to enroll, they stuck.
And our qualitative study provided us with some information about how we did that, highly
personalized, responsive, flexible treatment regarding
what services used, how, when, and where, focus on
clients’ goals. I mean, again, none of this is rocket
science, and it’s not genetic science either. It’s just
hard to execute. Warm, positive, welcoming, shared
decision making, and conveniently located offices.
It is something of a — there’s been a lot of
dialogue about whether we need to place these sorts of
programs in locations that are independent from big mega
hospital or mental health facilities. What we found is
that it’s okay to house these programs in mental health
clinics as long as the pathway in and the space itself
is welcoming and friendly. And the more you can make
them youth friendly, I think, the more successful you’ll
be. But I would say that it’s possible to position
these in mental health programs. Just to sort of give you a flavor for how
that — how this engagement and shared decision
making played , out from the perspective of the clients, we
ask them every six months to what extent did, for example,
pay attention to your preferences regarding job
or school. And you see here that almost ninety percent
said at least a little. And, you know, three-quarters said
a lot or a moderate amount.
How much did you feel that decisions about your treatment were joint decisions between
you and the connection team? And again, you see almost
everybody yes. How often does your psychiatrist involve
you in decisions about what medications to take?
And here again, the lion’s share, people said, yes,
a lot. And I think, you know, what does this mean?
Were our State mental health authorities listening in to
these interviews? No, but sort of the whole package of
these programs, and they came to visit them, they saw
it, and they talked to people. They were able to see
that this was a program that had buzz. These programs
were working, that people were staying with them.
Outcomes achieved. So I’m going to show you just some of our
preliminary outcomes. And again, this was an
, uncontrolled trial. We were able to compare
our outcomes to those reported in the literature,
and they’re certainly comparable. Again, you see
the pattern of service utilization with higher
service utilization at first within that stabilized.
And that kind of layers onto increased — this is the
Mytech Gaff Occupational Functioning Score, so it’s a
score of zero to of how well individuals are doing in school
or work. And you see that that went up from forty
to about Seventy. Seventy is sort of indistinguishable
from normal, so right at that normal range. This is the
percentage of people in work or school by the end of
two years, percent in work or school.
So you’re talking about — I just want you to
understand that these were young people who were very,
very psychotic, often, you know, had to drop out of
school, had a job, they were unable to continue. And by
the end, the vast majority of them were able to rejoin
the workforce or rejoin — reenter school or both
actually. And here are the rates of remission from
psychotic symptoms, and you see relatively rapid rates
, of remission that persisted. And again, I
think the point — one point I want to make here is
that just because someone wasn’t in remission or had
persistent psychosis symptoms, that does not mean they
can’t stay in work or school. People can be in work or
school and be highly symptomatic. We certainly know that
from Ellen Sachs and many other people. And so,
the idea here wasn’t, oh, this person has symptoms,
so they can’t live a life. No, not at all. That’s not where
we’re coming from. It’s that — you know, it’s living
with and managing symptoms to have a life.
Finally, community support and financing. I
do want to say that, you know, I’ve spent a career
trying to implement evidence-based practices. And I
have a talk that I gave for, like, ten years, “When
Evidence-Based Practices Fail: What Next?” This is not
like that. There is — this program just mobilizes the
community. You don’t have to do any convincing to get
people to understand this. And there’s actually a huge
amount of energy around this, and I think that it’s just
a remarkable experience as a clinician and as a
researcher. , I want to say one other thing about community
support that maybe is a little more troubling, which is
that part of the enthusiasm for early intervention also
comes from the episodes violence that our country has
endured. And I think for us, it’s a really — you know,
it’s a two-edged sword, as it were, because, you know,
you never want to ride that wave. On the other hand,
you know, it is a reality. Violence is a reality, and
certainly untreated first episode psychosis, if there’s
a population that may be at higher risk amongst people
with mental illness for violence, this would be one of
the leading groups. And so, you know, we — and the other sort
of negative is that this really affects our consumers.
I mean, it’s very frightening for people and
their families to be living in a community where
this stuff is on the newspapers and in the news, and it’s
just — they just don’t want to hear it, and it’s frightening.
So, you know, in terms of community support, it’s complex. It’s complex. But it’s a reality,
and I think that the will — the political will
to support these programs does come in some part from
sort of the , fact that some of these violent incidents
have forced a look at our society. And some people have
come to the conclusion that mental illness needs more
support. And I believe that mental illness needs more support.
But anyway, that’s just something that’s a part
of this complex mix.
And then the financing is really the bear right now because these are programs that
have components that wouldn’t ordinarily be reimbursed
through insurance. And so we’re working on that right
now, and there’s certainly a lot of data that these
programs are cost effective. So I’m going to conclude by just sort of
reminding you of the fact that we have maybe — we’ve
solved some of the problems. We have some answers. But
there are far more questions that we have to work on
than we have answers, and I’ll just highlight some of
them. First, it’s this whole issue of reducing the
duration of untreated psychosis. Tom has referred to
this several times today. Early intervention services
will work to reduce the duration of untreated psychosis
, in part, but that alone will not really address
the issue of the gap between the onset of illness
and help seeking. And that’s a very complex process.
I think NIMH has funded a number of studies to try
to learn more about this in the United States. We are also
working on that as a follow up to our RAISE project to
try to learn from our participants what were the missed
opportunities. How could they have gotten to treatment
more quickly? So we need to learn what reduces the
duration of untreated psychosis, what are the road
blocks. And then finally, what is possible in a
complex system with limited resources? If we were, you
know, doing TIPS in Norway, you know, we might be able
to finance a big program to educate everybody and have
helplines and everything, but that’s not going to be
possible in this country. So we have to be more
strategic about it, and we have to learn more about it
within the various heterogeneous cultures of our
country. There are a number of intervention challenges.
The role of peers and peer support I think we still
, don’t know. There’s no question that peers
within mental health services have now, I believe,
shown to be an important part of our system, but we need
to work — I think we need a little more understanding
of the role of and peer support in first episode services.
Components of treatment. CBT again, there’s a
fair amount of evidence that CBT is helpful, but we’ve
had a devil of a time in this country disseminating CBT,
and I’ll just leave it at that. We have questions about
the role of cognitive remediation. That’s very
exciting. Right now, you know, you know, it’s not
necessarily included in all first episode program, but I
believe that will happen within the next five years.
We’ll have the data and it will be incorporated. And I’ll talk about substance abuse in a
second. I think trauma is a whole other unexplored area. Every day I get an email from somebody
saying, you know, citing a paper on the role of trauma
in the development of psychosis. And I think that
that’s another area that we have to learn more about
and understand how to address it in treatment.
Medication issues, again, I mentioned shared , decision making as really being critical,
and the notion, I think, we in psychiatry have a very
hard time kind of navigating what Pat Deegan would say
is the divide between the duty to care and the dignity
of risk. What if someone says, I don’t want to take
medicine? It may be a perfectly rational choice to make,
and how do we build that effectively into treatment?
And I think we need to study it.
And then a key issue, a very key issue, is the
length of treatment. At the beginning I told you that
early intervention services are superior to usual care
for as long as the services are delivered. But when
we’ve done follow-up studies, the few that have happened
haven’t really been all that convincing to me. And then
we see studies where if we can extend these services,
the benefits persist. And so, then I ask myself as a researcher,
at what point does early intervention treatment
become simply good treatment? Is the answer here
that we just — we have the answers, we just haven’t been
supplying people with good treatment? Is this whole
early intervention thing really just supplying good
treatment , to people early? And the use of electronic
and online tools. Again, I think you’ve heard allusions
to that today. I think that we have a lot more that
we can do in the community using online tools.
I want to just say a couple of things about substance use. There’s a lot of — there’s
been a fair amount of research on substance use and early
intervention. We know that, you know, sixty to seventy percent
of our young people who come to us will have either
diagnoses or problems with cannabis or alcohol. And
what this slide shows you is just one of these studies,
which follows people out. And what you see here, this
green group is a group that used and stopped, and this
group actually ends up with better and higher functioning than the group who never used,
and the group that has continual use.
But what I really want you to see is that —
so you see that the folks who stop do better. But I
also want you to see that a bunch — about half of those
who used stopped using without any fancy substance use
services. And what we see now in early intervention is
that with just decent harm reduction kind of basic dual
, disorders , about half to two-thirds of these
young people just stopped smoking weed and stopped
drinking. But the ones that don’t, we don’t know what
to do with. We don’t have tools.
And this is a recent study that was a very well done randomized trial of a group psychological
intervention for young people with a first episode
psychosis and cannabis dependence, and they did a
randomized trial of this intervention, high quality, and
there was no improvement. And that’s been repeated now
several times. We really don’t — there is a core group
of people with pretty hardcore substance use and early
psychosis that we just don’t have the tools for yet.
I included this slide here to sort of remind me to talk about again this whole question
of should we be treating young people with antipsychotics
from the time we see them until, you know, the time
they leave us. This was a study that was conducted in
Denmark recently — in Holland recently, published
in JAMA Psychiatry. And what it did was it took remitted
first episode patients, one hundred twenty-eight
people who responded to antipsychotics. It randomized them to maintenance
, treatment, or dose reduction, or discontinuation
with antipsychotics.
And there are two things to know about this study. At months, there was not a single advantage
to dose reduction or discontinuation. People in that
arm had more relapses and poorer function. Seven years
later, turned around. The individuals who were in the
dosage reduction discontinuation arm had double the rate
of functional recovery. It’s a complex study. It
doesn’t mean that the people in the dose reduction arm
didn’t take antipsychotics. Most of them did. But the
point here is that it really is very provocative about
the potential role of — the potential problems with
persistent antipsychotic treatment. I see some questions here. This study really
gets people talking. And I don’t want to, you know —
but it’s very provocative, and it makes us — it should
make us think about our treatments. And here’s the study that I was referring
to about how we can maintain the benefits of
early intervention treatment if we extend it beyond
early intervention. So here you have — this is
a symptom , rating scale. The SAPs goes from ten at baseline
to two point two three at two years, and stays at two point one two
at five years. And so, the real question is, you know, how long — in
New York we’re offering this service for two years.
We could never get this service out of the gate if
we said that this was going to be a new permanent service
for folks. And further, it would be very un-recovery
oriented if we said this is something need forever. But
these are questions that we have to answer.
Just the whole question of whether it’s cost effective. This is just some data from a cost
effectiveness study that looks at — from a study in
Australia, does this program cost too much or does it
cost more or cost less than usual care? And here you
see that using a bootstrapping approach that basically
every — all the possibilities ended up in the quadrant
where you have better outcomes and reduced costs. And,
of course, the reduced costs here in another study comes
from the reduction in inpatient stays. And in terms of financing, the last point
I’ll make is that again with the Affordable Care
Act, it does provide some benefits — some opportunities
for early , intervention services in that youths can stay
on their parental private insurance, that Medicaid
eligibility is no longer tied to being already disabled,
and that State Medicaid plans can be modified to cover early
intervention services. But in doing all this, I mean, we’ve watched
ACA roll out, and unfortunately I’m less optimistic that
ACA is going to change the landscape for this particular
problem. And also, in implementing it, we really need a
payment model that incentivizes and covers the uncovered
pieces, and also, again, doesn’t incentivize over and
under treatment. And that’s really a tricky thing.
So I’ll just conclude by saying that in New York, we’re continuing with our demonstration.
We’re going to be working on efforts to reduce the
duration of untreated psychosis. We’ll be fine tuning
our intervention. We’ll be working with the Office
of Mental Health of New York State to develop
funding. And I would say at this point we’ll also be working
nationally to try to contribute to the national effort
to bring these services to scale. And at the same as
we’re doing that, we’ll be trying to continue to
, incorporate a research infrastructure so that
we can generate new knowledge as we do this.
Thank you, and thanks to Bob and to NIMH for kind of supporting this work and the work
that I think has really translated to services that people
are getting now.

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