MHSR Day 2: Improving Quality of Care for People with Severe Mental Illness

DAY 2 – IV. PAPER PANEL 10AM Hello and welcome to our session on improving
quality of care for people with severe mental illness. And I’m just here to introduce. Our first speaker is Phil Yanos from the John
Jay College of Criminal Justice. YANOS: Thank you. I don’t believe that I need a microphone,
but if you can’t hear me, let me know. So where are the presentations over here? There saved on the desktop YANOS: OK. So what I’m going to be talking about is how
we can try to improve what we call functional outcomes, at least in the language of NIMH,
among people with severe mental illness by targeting something called self-stigma. So I’m going to give you a little bit of background
about why we think that this is an area that should be targeted. I’ll tell you a little bit of a story about
the research that I’ve been doing with my colleagues in this area and then I’ll get
to the study that we currently have funded and some preliminary findings (ph). OK? So, I want to acknowledge our grant, which
is still funded until 2017, and my co-investigator Paul Lysaker (ph) and Steve Silverstein (ph)
and my long-time (inaudible) and Lars Hansen (ph) from Sweden. I’m going to present some of his findings
as well. And then my doctoral students who’ve worked
on this project, Lauren Golzel (ph), Jeff Shenker (ph). And Lauren (ph) is here, so you can ask her
questions if you want to get the inside scoop on some things. So anyway, (inaudible) I’ll talk about the
rationale for targeting self-stigma, explaining why that’s something that we think can improve
functional outcomes, talk about narrative enhancement cognitive therapy, which is the
intervention approach that I (inaudible) and give some of this preliminary evidence. So, the problem of impaired functioning in
severe mental illness is a clear problem. Even though we know that recovery is possible
and some people achieve full (inaudible), too many people live on the margins of society. There’s plenty of evidence that there’s diminished
social interaction, very high rates of unemployment, et cetera. So, I don’t have time to go into demonstrating
that, but I think that’s something that most of us know. Something I want to emphasize is that impaired
functioning is only partly explained by symptoms. So, we focus a lot on giving people medication
that we know works to alleviate symptoms and other treatment. But impaired functioning is only partly explained
(ph) symptoms. And so, very important sort of work that I’d
look to explain this was written by (inaudible) in the ’90s. And so, she wrote about how she looked at
herself as a teenager who’d been diagnosed with schizophrenia, sitting passively in a
chair smoking cigarette after cigarette. And she said, “It’s not so much mental illness
that I’m observing (ph), but rather the (inaudible) of faltering human spirit.” And this resulted from viewing herself as
others see. So, she was getting treatment. Her symptoms were not active. But there she was, completely disempowered,
completely defeated as a human, functioning was impaired. So, stigma comes into play when we think about
impaired functioning that’s not just the result of symptoms in many ways. And of course, discrimination is important. It limits opportunity, keeps people out of
normal social roles because of discrimination and that’s one important part. And not seeking help is another important
part. And we hear it about over and over again. We heard about it this morning. But I argue and I hope I’ll demonstrate that
it’s not – even if we got everyone who needed help to
seek help, we would still have a problem here. And that’s related to the internalization
of negative stereotypes for self-stigma, and that’s because our treatment systems sometimes
facilitate this process. And — so, even if we get every day treatment,
we’ll still have the problem of self-stigma which will impact functions, unless we change
our treatment approach. OK? So we need to go beyond just getting people
to seek help, focus on the way we’re offering services. So, a strict definition is that self or internalize
stigma — and the two terms I’ll use interchangeably — are — occur when someone believes that
the negative stereotypes are legitimate and they apply to them, they are member of the
group. And so, I also want to point out that in some
professional circles, this is a good patient, this is somebody who has good insight. They believe they have mental illness, right? But this is somebody who could be utterly
defeated by acceptance of the negative stereotypes. So, I just — a little diagram. So really — a combination of these two things
leads to the incorporation of these negative stereotypes into your self-definition. We know that what we could think of as elevated
or clinically significant self-stigma is fairly common. Roughly a third of people with severe mental
illness demonstrate what we define as clinically significant internalized stigma. So between 20 and 40 percent. The biggest studies were done in Europe by
Rohan (ph) and colleagues from (inaudible). And so, they found that the prevalence’s
were higher in most people with (ph) schizophrenia than among — with bipolar disorder or depression,
but they were still elevated in those groups. And so why do I- – and my colleagues think
that internalized stigma is important. So — OK. So it occurs, but what’s — you know, what’s–
where does this stand out when we think of negative symptoms, substance abuse, homelessness,
all these other things? So, we hypothesized (inaudible) that this
leads to a cascade of processes that impact subjective and objective aspects of recovery
process (ph). So, like (inaudible) was saying, people develop
these disempowered identities and this really kind of puts them in a place where they can’t
move. So, the paper where we laid out our conceptual
model is this one. And so, this was our conceptual model, that
basically you have a combination of internalized stigma and of awareness that you have mental
illness. This impacts hope and self esteem, diminished
hope, diminish self-esteem. This increases suicide risk, decreases engagement
in treatment and that leads to more avoiding (ph) coping. There’s impact on social interaction; people
become more isolated. Disengagement and avoiding coping leads to
impaired vocational outcomes and all of these things impact symptom severity. So they don’t cause symptoms, they’re not
the origin, but they make them worse. And we’re thinking of psychotic symptoms and
mood symptoms. So that’s the summary. I pretty much said it. So then, we tested it with a pack (ph) analysis
that we did, and this was the paper where we did that. And so we didn’t — we couldn’t include everything
and we didn’t have suicidality, we didn’t have vocational in there. But basically, we found this very strong connection
between (inaudible) stigma, hope and self-esteem, and that was related to depressive symptoms,
avoiding coping and social avoidance. And there was this indirect path to psychotic
symptoms. This is a research audience. I don’t have to explain the minutiae. OK. So, basically, it supported most of the relationships
that we hypothesized. And it sort of suggested that this model that
we had was accurate. And other people have tested it in other places. We — they had an opportunity then to test
the vocational connection with longitudinal data. And so this was an interesting opportunity. So, Paul (inaudible) in Indiana had a sample
people who were in a vocational rehab program, so they all had gotten their work assignment
and we looked at how baseline self-stigma predicted their improvement and response to
vocational rehab. And so based on what we found here was that
the baseline internalized stigma, controlling for symptoms, significantly negatively predicted
their improvement over time of vocational functioning. So even if they’re given a job opportunity,
right, if they’ve internalized these negative stereotyped, they’re less likely to respond
and engage. OK. So this suggested that that connection to
vocational functioning was also valid. Another study that we did looked at change
in internalized stigma and social functioning over time and do these two things change together. OK. And so, based on what we found here was that
change in the internalized stigma and mental illness scale predicted change in social functioning
across time (inaudible) controlling for symptoms. And so this suggests that if we could change
health stigma, we can also lead to changes in function. And it’s not — it doesn’t necessarily tell
us that it’s a causal relationship, but it suggested these things happen together. So, plenty of other researchers have also
supported that internalized stigma is found to be — is related to worse interpersonal
relationships and vocational functioning, so it’s not just us. And this leads to the conclusion that we need
to target self-stigma. OK? We need to do something about it and that
maybe if we targeted self-stigma, we could have an impact on functioning. OK? So, there are many other ways this can be
done and I’m a believer in peer and user-led interventions. But one of the things that we know about those
interventions is that a lot of people don’t want to go to them or they don’t use them
and they’re not as accessible in other ways (ph). So I felt that there should be a professionally-led
alternative as well. So, David and Paul and I developed something
that we called narrative enhancement cognitive therapy, and this was funded by an NIMH Exploratory
Development Grant. About 10 years ago we started doing it. And — so, we developed an intervention that’s
a group-based 20 session intervention and it has these three main (ph) components. So psychoeducation to help replace stigmatizing
views about mental illness and recovery (inaudible), cognitive restructuring, so teaching people
a skill to challenge (inaudible) about self, and then the narrative part, which is story
telling exercises geared toward improving your ability to integrate empowering themes
into your life story. So the narrative part was sort of the new
thing in it. This is what our manual looks like. And this is the Swedish version (inaudible). (LAUGHTER)
Something to do with (inaudible). OK. So why did we think that this was going to
have an impact on self-stigma? So we wanted to counteract negative stereotypes
with psychoeducation, we wanted teach people skills to counteract negative thoughts about
their self (ph) with cognitive restructuring, very well established method. And the narrative enhancement was — is intended
to foster greater insight as well as impact hope and self-esteem in more enduring ways. So, feel like — if we really want to get
at those schemata, these stories that people tell about themselves, we need to kind of
get into their own telling of their life story. And so, we also have this view that everyone
once in a while, someone’s going to have kind of an epiphany or ah-ha kind of moment. And we have — we’ve heard about that (inaudible). OK. So narrative — we’re not the only ones talking
about it. You know, this is a book about narrative and
this is an example of other efforts to get story telling about mental illness out. So, I don’t have time to go into a why, you
know, we think it works. But I’m going to give you some of the evidence
that we have. And so basically comes from six studies, four
which have been published and the two unpublished ones, I’ll be giving you a sneak peek at. So the first one that I want to tell you about
is the quasi-experimental study that was done in Israel. So the manual has been translated to Hebrew. And so this was the study of two different
sites that (inaudible), and so one implemented NECT and the other didn’t. And so basically, what we found was that self-stigma
decreased among those who received NECT, you know, (inaudible) about 0.5. Their subjective quality of life improved
and there was improvement in self-esteem and one of these subscales of hope. These were all consistent with the things
that we thought would happen for subjective outcomes. This was a qualitative study that was also
done among completers (ph) of (inaudible) in Israel. And basically, the themes that people voiced
were that participating in the group led to experience of learning, positive changing
and experience of self, acquiring positive cognitive skill, enhanced hope (inaudible)
and emotional change. So these were things that were consistent
with what we hoped were happening. When we had the Exploratory Intervention Development
Grant, we had money to do a very small RCT. We had 39 people. So as might be imagined, we didn’t find significant
effects with that small sample size. But we saw effect sizes that were similar
to what we found in that Israeli study. So, it suggested that if we powered it adequately
(ph), we would be able to get what we need. This was the uncontrolled study that was done
in Sweden. And so the paper is now in press. And so basically, what they found was that
without a control group, we had effect sizes of one, basically (inaudible) sizes in reducing
self-esteem and — I mean, improving self-esteem and reducing self-stigma and a smaller effect
size for perceived quality of life. And the randomized control trial that they’ve
recently completed with about 100 people in it found that when you compared it to a (inaudible)
control group, you got effect size of about 0.5 for self-stigma and self-esteem. And they didn’t find significant differences
in subjective quality of life. So this is something that’s going to come
out soon, but this is our first kind of confirmed support from an RCT. So our current study is funded until 2017
and we’re shooting for a target of 175 people. We’ve recruited over 140 so far. And this has a active control group of supportive
group therapy run by the same people (inaudible) doing the NECT groups. And we’re focusing on objective outcomes,
such as including the — well, it’s measured by the (inaudible) quality of life scale and
the multidimensional scale of independent function. So, just — and so it’s being done in – in
Newark and (inaudible), New Jersey and Indianapolis, Indiana. First, people are screened to see if they
have elevated internalized stigma. So it’s targeted toward people who have this
clinically significant. And it’s focused specifically on people with
schizophrenia and schizoaffective disorder. So it’s not broadly geared towards severe
mental illness, So just some findings. So in — first of all, in the baseline data,
we find (ph) that internalized stigma continues to be a strong predictor of dysfunctioning
(ph) and the quality of life scale total score. It predicts uniquely (ph) six percent of the
variance in it — in the base line data. We control for positive and negative symptoms. And it continues to be associated with other
variables that we think are part of this overall process of avoid coping, interpersonal functioning,
self-esteem and general (inaudible). And what I found from looking at the sort
of time one and time two data comparing people, is that we have — getting close to a statistically
significant difference for internalized stigma with an effect size of about 0.5. So basically see that — we have about a full
standard deviation of reduction internalized stigma in the NECT group and then a smaller
reduction in the supportive therapy group. So, it’s getting close. As we get more people, that should be a statistically
significant finding. And in terms of functioning, we’re seeing
improvement in both groups, but greater improvement in the NECT group. And what I found — what we’re finding the
most kind of action in is in this intro-psychic foundation subscale of the quality life scale,
which has to do with engagement and motivation. It’s a subscale that really — it’s rated,
right, so the person is really tapping into the person’s interest in engagement in the
world. So it seems like that’s where we’re getting
the most impact here. And you can see there wasn’t any change in
the supportive therapy group and we see a change without a third of a standard deviation
in the NECT. So this is where I think we’re going to see
the most change if we — as we get to the end, and hopefully for my sake, it’ll work
out. So, basically what I want to say about NECT
from what we know is that on this fairly clear evidence, that it works on self-stigma from
the Swedish study and the Israeli study, effect sizes are about 0.5 and there’s emerging evidence
that it can impact functional outcomes, especially this motivation of engagement piece. And — but more weakly. So we have to kind of have bigger – more
power to detect it, maybe effect sizes of 0.2 or 0.3. But if we scale things up on a population
level, that can mean a lot, right? And so this is just my pinch (ph) here for
when we’re thinking about our vision for the mental health system and evidence-based practices
that we want to offer, we have to think about we’re not just trying to provide opportunity
which we offer through supportive employment (ph), socialization and housing, not just
teaching skills but inspiring hope and desire. And this is what’s impacted by self-stigma. So, that’s more or less on time, right? (UNKNOWN): Yes. YANOS: OK. (LAUGHTER)
OK. And we’ll have time for questions at the end,
I guess. (UNKNOWN): Right. YANOS: All right. (APPLAUSE)
OK. Our next speaker is Beth McGinty from the
Johns Hopkins Bloomberg School of Public Health. MCGINTY: OK. Hi, everybody. I am going to talk about some early research
– some early results from a mixed-method study of Maryland’s Medicaid Health Home Program,
which is a Medicaid Health Home for people with serious mental illness. I want to acknowledge my collaborators, many
whom are in the room. Gail Daumit is here as well as Alene Kennedy-Hendricks
(ph) and Sarah Pollock (ph). As well as I wanted to thank NIMH for the
grant funding that is funding this work. So, just a bit of background on the Medicaid
Health Homes. So this Medicaid Health Home is part of the
ACA demonstration program which allowed states to create health homes for Medicaid beneficiaries,
a high-cost, high-need subset of those beneficiaries. And some states chose to focus health homes
on people with serious mental illness, others did other population, like older adults with
multiple chronic conditions, for example. So this is not a mental illness-specific demonstration
program necessarily, although multiple states, including Maryland, have focused on serious
mental illness. What the demonstration does from a financing
prospective is allow (inaudible) to bill for Health Home services, which includes services
in the buckets that I bulleted (ph) out below, things like care coordination, care management,
transitional care, that were not previously available through Medicaid. And to increase adoption of this Health Home
demonstration program, CMS provided an enhanced two-year Medicaid match, a 90 percent match
rate. Maryland is out of that Medicaid match period,
but certainly benefited from it initially. So Maryland’s Health Home program for people
with serious mental illness is unique in that it’s the only state implementing health homes
in Psychiatric Rehabilitation Programs. And so psychiatric rehabilitation programs
is a community-based setting that are already the nexus of coordination for social services
of this population in Maryland. So many of them, as you’ll see in my presentation,
have supported employment on site, they provide supporting housing services, vocational training,
other psychosocial rehabilitation services. In addition, the Psychiatric Rehabilitation
Programs in Maryland in the large majority of cases, with just a few exceptions, already
have close relationships with mental health treatment provider facilities. Some of them are formally affiliated with
mental health clinics, some of them have a psychiatrist on site, et cetera. So the innovation in terms of the Health Home
model in Maryland is further integration of somatic healthcare services into this PRP
setting. So, just a bit about sort of the required
structures so that we’re all on the same page of what these look like in Maryland, Health
Home teams are required to include a Health Home director, a nurse care manager, sometimes
referred to as a nurse care coordinator, and a physician or a primary care physician or
a nurse practitioner, physician’s assistant, consultant (ph). In practice, people can fill multiple of these
rules simultaneously, and because it’s a 0.5 full time requirement for a certain number
of consumers, right? So in many cases, we have seen people serving
as both the Health Home director and the nurse care coordinator simultaneously. There are 48 physical PRP sites across Maryland
that are implementing adult health homes for people with serious mental illness. And those 48 sites are part of 25 umbrella
(ph) organizations, so some psychiatric rehabilitation organizations have four or five different
sites. Implementation of this program began in October
of 2013 and has taken place on a rolling basis. So it’s not the case that everybody just scaled
off and started implementing in October 2013. We saw sites go online throughout early 2014
and implementation has continued with new sites adopting over the past couple of years
and sites are also continuing to enroll new participant’s overtime. So, rolling implementation is what we’re dealing
with here. Just a bit in terms of population. So, we are focused on Medicaid beneficiaries
with serious mental illness. We estimate that there are about 40,000 total
people in that group in Maryland. The Health Home eligible population in Maryland
is the subset of those beneficiaries who are receiving psychiatric rehabilitation services,
which is about 11,000 people. To be eligible for psychiatric rehabilitation
services in Maryland, you have to meet the state’s definition for serious mental illness,
which is essentially having a schizophrenia spectrum disorder or bipolar disorder, couple
other things in there as well, and having significant functional impairment. OK. So that’s the eligible group. Then as I said, implementation has been rolling. So as of today, there are about 5,000 participants
who have been enrolled in the Health Home program. If enrollment (inaudible) continues at the
current rate of new sites adopting and sites continuing to enroll additional people, that’s
expected to increase to about 8,000 or 9,000 over the next three years. So the results I’m presenting today are the
first part of a three-part studies. So I’m just going to give you the big picture
so you can understand where this fits in and where we’re headed. The first part, which is what I’m going to
focus on here, is a study looking at implementation of these health homes. So assessing Health Home structure, implementation
strategies, barriers and facilitators. And the second piece will be on outcomes evaluation. And then, the third piece, which I think in
my mind at least, is the most exciting, is a study designed to connect implementation
components with outcomes, so to assess how our different Health Home structural components,
different implementations strategies, various facilitators associated with (ph) consumer
outcomes. All right. So, we’re doing part one here. So the research question that we’re focusing
on is what are health homes leaders’ perceptions of the key strategies, barriers and facilitators
to integration of behavioral, somatic and social services in the Maryland health homes
context. We used semi-structured qualitative interviews
and surveys with key leaders at each Health Home site. Leaders included organization leaders like
PRP directors, Health Home directors, Health Home nurse care coordinators and other people
who those folks identified as key leaders. We conducted in-person interviews using a
semi-structured protocol — they were about 30 to 50 minutes long — and administered
a survey at the same time as conducting the interviews using an iPad. There were two versions of the survey. We asked a bunch of site-level sort of or
structural questions. “Do you have a EHR?” For example. And you know, we didn’t need to ask that to
four people at the same site, so we asked one person at each site those sort of structural
site level questions and those are the survey results that you’re going to see today, those
site-level questions. The interview measures was a semi-structured
protocol, 14 open-ended questions designed elicit leaders’ perceptions of implementation
strategies, barriers and facilitators. And the survey measures, again, that subset
of site-level measures. You’re not going to see all of this today
because it would take an hour, but you’ll see some of them. And here are the domains; location of services,
Health Home team composition, Health Home functions, care plan component, health information
technology and information sharing capacity and partnerships with other organizations. For the interview data, we used a hybrid inductive-deductive
coding approach. You are seeing the very first cut at analysis
here. So we’ve essentially done one iteration of
analysis of the survey data in what will be a multiple iteration team-based coding approach
process. So, I expect the themes that you see here
today to evolve over time. And we used descriptive statistics to analyze
the survey data. So for today, the results that I am presenting
represent a study sample of 76 Health Home leaders who represent 38 of 48 physical Health
Home sites. Data collection is almost complete, but not
quite. As of last week, we actually have data for
39 of 48 sites and there are a couple more strugglers that we are of roping in to get
their data from. So, near complete but not totally complete. And for this presentation, you’re seeing analysis
of those 76 leader interviews that we have and then the site level data from 38 surveys,
one from each site. So jumping right into the initially emerging
key themes, the first was that leaders thought the geographic proximity of services was helpful
but not enough. So their perception was that having co-located
or other geographically proximal services, a clinical — a clinic across the street,
for example, was certainly a facilitator to communication and collaboration and improving
quality of care for consumers with SMI. But without other processes like regular weekly
meetings and effective case management, proximity alone was viewed as insufficient. The figure here just shows you an idea of
what we are looking at in terms of spatial arrangement within the sites that are included
in the study. So you can see here that for primary care
providers and substance use treatment providers, most of them are in separate space from the
psychiatric rehabilitation programs. There was more co-location from mental health
providers and supporting employment (ph) of housing staff. Continuing with this theme, this table gives
you a slightly different look at this co-location data. So here, you can see what proportion of different
services are walk able from the site rehab Health Home setting, what proportion have
transportation provided. And I’ve given you an illustrative quote here. This one leader says, you know, “Most of our
patients here get mental services through the outpatient mental health clinic. What’s nice about having primary care here
is that — and the psychiatrist here is that when there is an issue, we can coordinate
between the two of them and sometimes we can even get them to talk to each other.” (LAUGHTER)
All right. So, moving to the second key theme that came
out of this first round of analysis. So leaders really perceived poor quality of
somatic care for this population as a barrier that needed to be overcome. This probably doesn’t surprise anyone in this
room. But the form that this took is interesting. And Health Home leaders talked about strategies
to try to overcome this barrier, and I’ll walk you through each of these on subsequent
slides. So here’s some quotes illustrating their perceptions
of poor quality. It was glaring that they — consumers with
serious mental illness — weren’t getting any screenings done and its like, “If I went
to my doctor, my doctor would order my lipid panel and my hemoglobin A1C. But because maybe they’re not seeing the whole
person as a whole, they’re not ordering those things.” Another person says “And I do think that there’s
an inherent and unconscious bias against people with serious mental illness. It’s unconscious as well, so advocating for
them is important.” And finally, “All of us would probably say
that we just don’t feel like they,” consumers with serious mental illness, “get looked at
the same way that you or I would. They might get passed off a little bit.” So Health Home leaders then went on to talk
about their strategies for combating this barrier. The first of which was partnering with primary
care providers who are accustomed to serving people with serious mental illness who have
expertise with this population or other vulnerable groups. So the quote here is from a leader whose organization
is partnered with the community mental health center and her perception is that this is
a good partnership because their mission has a lot of overlap and they work with similar
vulnerable populations. Another strategy was using Health Home staff
as consumer advocates. So a quote here, “It’s just amazing to me
the things that happened. My nurse will say she told client related
information to a doctor and nothing really was addressed. Then our nurse was like take another look
at this person.” And then finally, we heard from leaders that
at multiple sites, one strategy they used to improve quality of care was to direct consumers
to specific primary care providers in the community who they believed provided high-quality
care to this group. So a quote here, “Anyone who doesn’t like
their primary care doctor or it’s been forever and they don’t really have one established,
I’d try to refer them to this particular doctor in the community.” Information sharing and health information
technology infrastructure was a major challenge that was brought up by these groups. This is probably not surprising, given that
in the psych rehab setting, these are not in most cases places that are working with
well-integrated electronic health record systems. Some are, some have access because they’re
associated with a larger health system. In other cases, they don’t have that infrastructure. So you can see here, we asked about access
to accurate and up-to-date information in these given domains. And in the majority of cases, sites reported
having partial or no access to primary care provider notes, psychiatrist notes, information
about unmet health needs and unmet social means, slightly better information on housing
status, employment status and functional impairment and disability. Not surprisingly, since those are the things
that get focused in the PRP site. We just saw quote after a quote here about,
you know, we don’t have an EHR (ph), we have to enter data in multiple different systems,
we don’t have good population health management software, the billing system which is called
eMedicaid in Maryland doesn’t link up to any of our other systems so we’re entering data
a lot. This was perceived as a major challenge. And unlike with poor quality of somatic care
where Health Home could come up with strategies to try to address this, we just were a little
bit at a loss for this one. We heard people saying things like I just
don’t think there is a system out there that will work for us kind of quotes. So this one, there was a lot of frustration
and it was perceived as a pretty big barrier. And then finally, the last theme that I’ll
highlight today is there was a perception of attention between hands-on care and hands-off
coordination in setting up and delivering Health Home services. So, leaders observed that Health Home staff
and particularly the nurse care coordinators struggled to balance provision of direct hands-on
care to high-need consumers versus population health management coordination, right? And I love this quote, they — my nurse says
(ph), “Don’t want to simply do population health management. They want to bandage things and poke at things.” And this leader — and we’ve heard this multiple
times — thought that this was a barrier to both recruitment and retainment of nurses
who may not want to serve some of these coordinating and management roles and who might be worried
in fact about losing some of their clinical skills. So those are four of key themes that came
up from early analysis of this data. And stay tuned for the outcomes evaluation
and the analysis connecting implementation data with outcomes, which just to reiterate
sort of reiterate what we’re getting at there, some of the potential questions that we could
answer with that analysis is for example, which structural components of health homes
like spatial arrangement of services, Health Home team composition are associated with
improved consumer level outcomes, which coordination processes are associated with improved consumer
(inaudible). So, stay tuned. OK. I have to give our group excellent marks on
staying on time. Very good. All right. Our next presenter is Gregory Teague from
the University of South Florida. TEAGUE: OK. The pressure is on. (UNKNOWN): Pressure’s on. (LAUGHTER) TEAGUE: Can’t start the timer yet. There we go. (LAUGHTER) (UNKNOWN): Starting now. TEAGUE: OK. Not there yet. Here we go. There we are. OK. I want to give acknowledgment to my colleagues,
Maria Monroe-DeVita (ph) and Lorna Moser (ph), who would be here except they have to go off
and do some of the very work that’s described here. I’ll take responsibility for the presentation. We all take responsibility for the measure
in various ways. And the two of them have been doing the lion’s
share of the work of training people, reviewing — renewing (ph) teams and generating the
data that I’ll talk about here. So, I’ll talk about ACT, not much because
this audience probably knows about that, about fidelity (ph), a little bit about the measure
and then looking at some results we’ve got in a relatively low-tech way and some conclusions
about fidelity and these services. First of all, assertive community treatment
is a service that’s not for everyone, it is for people with serious mental illness. It’s a community-based program. People who have significant levels of psychiatric
disability. And it has a very broad mandate at (ph) very
high ratio of staff to clients, meaning the other way around. Very few clients per staff member. Multi-disciplinary, work as a team, take responsibility
for behavioral health services except for inpatient hospitalization, have the expectation
of providing services at the very top of the level of quality, which is to say that the
expectations have increased over the years. Time unlimited, which no longer should suggest
lifetime but should suggest there’s no particular time limit, but really a focus on moving on
to less intensive services. Trying to address essentially everything that
someone may need to have a full productive life living in the community (inaudible) satisfying. So, we’re looking at clinical outcomes as
well as all of those functional and experiential outcome fidelity. Look at the Donabedian (ph) quality model,
essentially the structures facilitate the provision of processes which yield the outcomes. For fidelity, we’re really just looking at
the first two. So structure and process so that we are understanding
what the model is that’s going to produce those outcomes. We have purposes for fidelity measurement
in the research field. We want to improve the validity of influence,
assuming inferences in our studies, understand what pieces have been most effective and also
use that as a way for theoretical extension and enhancement as we go on. There are complimentary purposes in practice. We want to replicate what’s known. We want to use that (inaudible) and I’ll talk
about that today as a tool for quality improvement and sustainability. But it’s also a basis for saying, OK, where
do we go from here and let’s hold those things constant and change those things that need
to be changed. Why do we need another measure for ACT is
the question, because we had one many, many years ago. Well, we developed that early model. It worked within a research context. We didn’t measure everything, but we measured
things that were kind of critically important. We put it together in a way that actually
made it very useful for practitioners to say, “Uh-oh, the model’s supposed to have these
kinds of things.” And so (inaudible) training in a practical
sense could differentiate ACT from other kinds of programs pretty well. But people didn’t pay attention to the omissions
in that scale and began to think, “Well, that’s all that ACT needs to be,” even though somewhat
later, a manual came out and said, “No, no, no, it needs to be much more complex.” People didn’t pay attention to that necessary
even though the initial article did warn them and (inaudible) ACT has moved quite a bit
since then. So there are some problems that are created
when you don’t have good fidelity specifications. One is if you’re not from a research perspective,
if you’re not measuring all the things that may be important, you ultimately don’t include
those in your models and you end up with in effect weaker program theory (ph) and you
are specifying from a research perspective your evidence-based practice poorly and the
evidence is weaker. There’s a complimentary set of problems in
practice if you overlook things that may or — may be important. And particularly, if the regulatory context
rewards certain things and ignores others, those things get decoupled from what had once
been a reasonably strong correlation or connection and the programs become less effective. And we’ve seen this over the years where the
research strength of ACT — research studies that demonstrate ACT is somehow less effective
than it used to be. There’s a number reasons for that, but fidelity
is perhaps one of them. We’ve seen this trend in a number of settings,
not just in the — in the U.K. studies. But those were ones in which fidelity was
very poorly measured. There’s also been a fair amount of magical
thinking around ACT, which is if you provide those basic services, then all the sudden,
all of these other good things are going to start happening, like criminal justice outcomes,
employment and so forth. Well, the studies do have a kind of a well
duh kind of emphasis, which is no, if you don’t provide the services, don’t look for
the outcome (ph). So what we do? We start with — go back to the quality model
and start with the outcomes and saying — say we’re looking for recovery outcomes of people
living satisfying lives. How do we get that? We provide flexible services, targeted, evidence-based
for what a consumer needs in the community. And how we get that? The structure is we have to have a multidisciplinary
team that is in fact operating in transdisciplinary way in an integrated team project (ph). So a measure that we have — my colleagues
and I have felt is the tool for measurement of ACT, 47 items, five-point response scales
in the format of the DECT (ph), six sub scales. Three of them are fairly traditional, which
is the structural pieces, the core team, which is the team leader, psychiatric care provider
or typically psychiatrist and nurses, and how it is that they work together, what their
jobs are and so forth. For practices, the kinds of traditional kinds
of things that ACT is expected to give high-intensity services based in the community, et cetera. The operations in (ph) structure is a fairly
broad list of activities that the team should — how it should work together and how it
should be structured? More can temporary pieces are evidence-based
practices provided by specialists. Similarly, to what degree are the specialists
there, how do they work together and how do they provide those services. And also, a very recovery-oriented, person-centered
planning scale, so that this is updating the old assumptions about how ACT use to behave. There is a comprehensive manual to go with
it and it has been developed by extensive consultation with ACT experts around the country. So it’s a case of, if you will, practitioner-informed
research. A couple of sample criteria (inaudible) sample
items with criteria. Each of those 47 may have multiple criteria
within them. Their rating scale has a way of breaking out
how to score each item. That was for integrated (inaudible) disorder
treatment, one of the evidence-based practices for person-centered planning. There are several criteria within this one
item. In all cases, there is multiple pages of description
on how to use — how to — where to get the data, what the rationale for this is and how
to score. So it’s fairly detailed. New (ph) reviewers take two days to do that
process. They access multiple data and rate things
independently, but then come together with a single rating. What’s important is that this is a design
for quality improvement. It’s designed to give feedback to people in
a very targeted way about what they need to do to improve their program. It’s been used in multiple states around the
U.S., also (inaudible) Canadian province and Norway. And Maria just told me she’s on her way to
China to do some training over there. So it’s being adopted. Two studies have shown that it does have – that
improved fidelity is correlated with the kinds of changes that you would like to see. The two studies that have been done so far
are looking at traditional clinical outcomes like hospitalization, high-intensity use (ph). This report right now, we’re talking about
looking at 144 different teams worth of data with various degrees of familiarity with the
team ACT. And two steps; one is all 144 teams, the other
is two sets of teams from two different states looking at data collected along with review
that measure — their proxies, if you will, for outcomes. This is a, as I said, kind of low-tech descriptive
report here. Now, measurement properties on the team ACT. As you could guess, this is — these are indices
(ph) rather than scales since there are multiple constructs. But there is still some encouragement to use
the numbers in a way that’s similar to scales because the internal consistency isn’t too
bad. It’s quite good for the overall scales and
it’s modest for some of the others. One is particularly low. But there is some sense that teams operate
in a way such as these things — scales hang together. If we do a factor analysis of scale scores,
they do in fact break out with clusters of traditional items in one quadrant and mostly
the more contemporary scales in the other. Differential implementation of the traditional
versus the more contemporary. So over here, we have the more traditional
scales with higher scores. By the way, the index is set at the average. So what you’re seeing here is the range of
the total with the mean (ph) at zero on this particular access, which is 3.7 roughly. Comparing with the (inaudible), the old measure,
this is implementing in one state over time. The (inaudible) is the blue bars. The difference between the team ACT scores
and DAC (ph) scores were significant for every measurement point except the 18-month measurement
point, which is to say that the DAC (ph) was not detecting omissions of the kinds of things
that the team should be doing. We look at scores by state, the seven states
involved in this study. We can see that there — there’s significant
differences between states in terms of the degree of implementation of these elements
of that. We break it down into the traditional versus
the contemporary. Two states do really well on the traditional
and as — almost as good as — well, better than the rest, more or less, on the contemporary. One does — one team in particular does better
there. One team here does very poorly in the contemporary. But there’s this kind of base level of mediocre
implementation of the traditional across all of these states. I’m going to talk about A, B, C and G in this
next slide. State A had the highest score overall and
they had significant levels of training and oversight. And they also mandated high service (ph). So that’s how we see those scores up there. State B, almost the same level. They had the highest score in the person-centered
planning. In fact, they have high levels of training
in recovery-oriented services. State C, the one with the highest level of
contemporary scales, had targeted training and doing evidence-based practices. And the state with the lowest scores had very
limited oversight of anything and especially had paid almost no attention implementing
evidence-based practices. So, there’s a correspondence between what
we’re seeing on the team ACT and what we know about the environments. We look a little bit at the correlation between
team ACT scores and the team performance variables in terms of retention of client’s competitive
employment, housing and staff. Turn over correlating, but — in two states,
but controlling for (ph) state. As I said, this is — this is relatively low-tech
and descriptive. The variables are — as you might expect,
not a very high percentage of people in competitive employment or education. And retention wasn’t terribly good on average. There were quite a few, 16 percent roughly,
living in things like assisted living facilities and group of homes and so forth. And a fair amount of — more staff turnover
than you’d hope to see in these programs. Just looking at correlation of scales with
those outcomes, looking at retention, everything was significantly related to retaining people
in the teams, most especially the traditional but also the contemporary. Targeting just competitive employment and
school, we see indeed this (ph) specialist team and providing evidence-based practices,
plus the overall were also important. Looking at retention and treatment, most of
these variables that are related — the items are from the structural and kind of traditional
elements. So, in fact, if you’re providing solid psychiatric
care, you’re going to help people stay in treatment. On the other hand, we also have attention
to vocational services and the presence of a peer specialist were also related. Competitive employment, we had… (UNKNOWN): (OFF-MIKE)
(LAUGHTER) TEAGUE: We had what we would expect to see
in terms of the vocational responsibilities, but also those features of treatment that
really targeted the whole person in kind of a recovery — recovery focus. For the presence of people in non-acute institutional
settings, negative correlation, as you might expect, for the supportive housing model and
with an orientation to self-determination. Interest and — and the nurses role were very–
they’re very important in terms of bridging between psychiatric services and the other
evidence-based practices. I won’t go in a lot details there. But retention was strongly correlative with
staff turnover, as you might expect, and with fidelity overall. But also, the absence of steady involvement
of the specialists involved there. Keeping those people on the team is a bit
of a challenge. And also, knowing how to assess what people
need and give that to them. So conclusions. First of all, this has been a bit of a circular
study in the sense of we’re learning some things about ACT and we’re also learning things
about the measure. But what we’re seeing is relatively mediocre
to high implementation, a lot of fairly mediocre implementation of this program. The — and most of it in terms of the traditional
parts of the model. So they haven’t incorporated the evidence-based
practices and the recovery orientation as much. Significant variation across states, what
you trained for, what — how you support, seems to have some impact on how well the
program is implemented. We’re seeing a strong connection between how
well you do certain things and the outcomes that you would expect to see. There’s a lot of effort involved in doing
this. But there’s some value, we believe, in calibrating
the effort you have to the scope of the services. It’s a very high-intensity, expensive service,
and it matters to do it right. Some conclusions about fidelity in general. First all, if we want to strengthen the impact
— public health impact of invention — interventions, we need to do things well and we need keep
our measures of what’s to be done up-to-date with what’s known. And if (inaudible) known is changing constantly,
we need to also measure for that. Just a note here, there’s a fusion of why
we do fidelity measurement for both research purposes and practice. The same kind of things you might do to improve
the practice are also going to improve the quality of the research if you’re measuring
programs. And just a hint comes out up here (ph) as
a strategic suggestion, which is that focusing on quality improvement and doing that on a
regular kind of way will get you by it because states and programs want to do well if they’re
targeting funding to higher-quality programs. This will also be a better base for research
on outcomes. Thank you. Here’s our people. OK. We’re still doing well on time if everyone
remembers we’re 10 minutes behind, so. TEAGUE: I didn’t make (inaudible). (LAUGHTER) (UNKNOWN): No, no. Yes, all right. Our final speaker — and she’s going to pronounce
her name and correct me when she comes up. It’s Ayse… AYSE: Ayse Akincigil. (UNKNOWN): Yes. (LAUGHTER)
From Rutgers State University of New Jersey. AYSE: I think my presentation is mostly following
Beth’s presentation where I’m going to talk about implementation of the Health Home model
and its association with adherence to psychotropic medications for Medicaid beneficiaries with–
living with the severe mental illness. But before I start, I’d like to acknowledge
my co-authors Stephen Crystal’s in the audience and Dr.Austin (ph) from Colombia (ph) (inaudible)
Missouri. And (inaudible) are from Rutgers. I also would like to acknowledge the AHRQ
for partially funding the project. In the treatment of schizophrenia or bipolar
disorder, there’s vast evidence that non-adherence to psychotropic medications are associated
with negative outcomes, including psych hospitalizations, emergency psychiatric services, arrests, violence,
victimization, substance abuse, self harm, suicide attempts. And it’s also correlated with poor mental
functioning, life satisfaction and quality of life. And it’s very prevalent, non-adherence (inaudible)
medication adherence is very prevalent. For example, 75 percent of the patients with
schizophrenia became not adherent to their antipsychotics within two years of hospital
discharge. There’s a systematic review of (inaudible)
that is reporting mean rate of medication adherence in schizophrenia is 40 percent — 41percent. Same thing with bipolar disorder, median rate
(ph) of lithium use for — from initial prescription to discontinuation going against the advice
of the provider was approximately two months. That being said, adherence has been a problem
that has been recognized by the physicians for more than a century. Are there conflicts (ph)? There (inaudible) determined. There are many reasons behind suboptimal adherence. It can be poor insight and lack of illness
awareness, the stress associated with the side effects. In (inaudible) with persistent symptoms, some
patients believe that medications are no longer needed, cognitive impairment (inaudible) proper
adherence, co-occurring substance abuse is a big problem and environmental factors, such
as supportive family or other social environment. With such a complex problem with a multi determined
(ph) nature and the literature tells us that personalized multi-modal approaches are often
required to include adherence. So our objective is to examine the impact
of the system level (ph) service delivery (inaudible) on medication adherence. It’s a natural experiment. It’s a system level (inaudible) reform that
was implemented start — the implementation started in January 1st, 2012. It’s a Health Home model in a mid-western
state targeting all Medicaid beneficiaries with severe mental illness and additional
medical co morbidities. Therefore, these are complex patients, high-cost
impaired. And the model was adapting a whole person
approach. Primary medical care was integrated into all
existing community mental health centers in that state. The characteristics of the program; patients
were managed by teams that include a primary nurse (inaudible) manager, a health coach
and case management staff. Non-medical supports and social services were
emphasized. And the infrastructure behind the system was
impressive, care provision (ph) was supported by base electronic health information accessible
to providers. And this information system integrated data
from lab procedures, Medicaid-paid clinical services and pharmaceutical data. That support include real-time notification
for hospital admissions, to assure (ph) continuative care, to assure (ph) transitions from hospital
to the community is smooth and also alerts for overdue refills, you know, if the medication
was supposed to be refilled by the patient and there’s no claim that shows in the Medicaid
claim system, that would be an alert (ph). A main characteristic of the program is there
are these monthly (inaudible) done by primary nurse manager (ph). Every month, the nurse would review the available
records, preferably with the patient, anything that comes through these information systems. And a whole person approach was adapted, like
if the patient is on an antipsychotic, the nurse care manager is supposed to check if
metabolic monitoring is happening, you know, metabolic (ph) monitoring is happening. So, it’s a whole person approach. The nurses (inaudible) and try to — and they
work with real-time information from the Medicaid claims for hospitalizations and other (inaudible). The design was very simple. Again, these are the very initial results,
our first look at the data. So it’s a simple design, a single group (ph)
design. Basically, you’re looking at the (inaudible)
after meaningful engagement with Health Home and comparing to the adherence prior to the
meaningful engagement with the Health Home. Adherence is measured by pharmaceutical records. Basically, it’s 12-month medication (inaudible). Those who are not familiar with medication
adherence, there’s no gold standard. There are many ways to measure adherence and
none of them produce extremely reliable results. This is basically measuring the behavior of
going to back to the pharmacy and refilling your medications for an extended period of
time. And it has been shown that this refill measure
found, for example, missing medication for 10 days was associated with increased psych
hospitalization and emergency (inaudible). So, it’s a single group design (ph) comparing
pre and post meaningful engagement with Health Home. And this has been done separate for two cohorts. (inaudible) more clear about that. I have — basically have two cohorts in the
study. There’s a schizophrenia cohort and a bipolar
disorder cohort. The first cohort is the schizophrenia cohort. And the diagnosis (ph) — schizophrenia diagnosis
in the pre periods. The way we measure medication adherence, we
follow the industry standards, the HEDIS quality measures for industry standards. So the inclusion criteria also kind of follows
that (inaudible) standards. At least two scripts (ph) for antipsychotics
during the pre period and post period, during measuring periods. And the target was those with poor medication
adherence during this pre period. In another words, those with a medication
possession (ph) issue of 80 percent or less. A similar method was used come up with the
bipolar disorder cohort from the claims. Moreover, there are some inclusion criteria
that are applicable to both cohorts. Standard inclusion criteria (inaudible) to
make sure that the measures are reliable. The study is (inaudible), excluding elderly. There has to be continuous Medicaid eligibility
during the measurement periods so that the measures are reliable. And final inclusion criteria is about this
meaningful engagement with Health Home in — during the implementation (inaudible) implementation. Basically, it is enrollment with the Health
Home for at least nine months within that first year. There results. Implementation of (inaudible) coincided with
average improvement on average rates of medication possession ratio from 55 percent prior to
the engagement at the Health Home to 66 percent on average. Same thing with the bipolar disorder cohort. On average, their (ph) medication possession
ratio (ph) was five percent. It went up to 64 percent after the engagement
with the Health Home. This is a very simple comparison to get signals
that are more supportive of a causal relationship. The next analysis we did was (inaudible). In other words, we just described the improvements
in adherence for each person. On average, medication possession ratios – adherence
measures improved 12 percent for the schizophrenia cohort, nine percent for the bipolar disorder
cohort. But then there are many — close to 30 (inaudible)
and patients are clustered within (ph) (inaudible). And these CMHCs (ph) are providing mocked
(ph) model care processes and there are CMHC (ph) characteristics that might be driving
these differences. So a sensitivity analysis (ph) (inaudible)
model, but then we adjusted for (inaudible) rather than intercept (ph). And our results were (inaudible) strong in
terms of statistical significance. Again, this was our first peek at the data
regarding medication adherence. So the initial signals are the helpful implementation
coincided with significant improvements in medication adherence for both antipsychotics
for those with schizophrenia and for both mood stabilizers for adults with bipolar disorder. But again, the future directions we should
be contracting (ph) control group, control for the (inaudible) and with medication management
practices in that state having that control group as well as exploration mediators (ph)
and moderators. Thank you.

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