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Coordinated Specialty Care Discharge, Transition, and Step-Down Policies, Practices, and Concerns: Staff and Client Perspectives

Authors:
  • Abt Associates

Abstract

Objective: In recent years, optimizing the process of transition and discharge from coordinated specialty care (CSC), a program that provides early intervention in psychosis, has emerged as an important focus area for program administrators, clinicians, and policy makers. To explore existing CSC policies and practices and to understand frontline provider and client views on discharge, the authors conducted a comprehensive analysis of staff and client interview data from the Mental Health Block Grant 10% Set-Aside Study. Methods: Data from 66 interviews with groups of CSC providers and administrators representing 36 sites and 22 states were analyzed, as well as data from interviews with 82 CSC clients at 34 sites. Transcripts were coded by using systematic content analyses. Results: Analyses of data from providers and administrators showed the heterogeneity of CSC program practices and strategies regarding discharge and highlighted a range of concerns related to postdischarge service accessibility and quality. Analysis of data from client interviews reflected the heterogeneity of transition challenges that clients confront. A significant number of participants reported concerns about their readiness for discharge. Conclusions: CSC discharge policies and practices vary across CSC programs and states. Frequent clinician and client concerns about optimal program length, transition, and postdischarge services highlight the importance of sustained policy and research efforts to develop evidence-informed practice guidelines and possible modifications to the time-limited CSC model that currently dominates the field.
Coordinated Specialty Care Discharge, Transition, and
Step-Down Policies, Practices, and Concerns: Staff and
Client Perspectives
Nev Jones, Ph.D., Becky Gius, B.A., Tamara Daley, Ph.D., Preethy George, Ph.D., Abram Rosenblatt, Ph.D.,
David Shern, Ph.D.
Objective: In recent years, optimizing the process of transi-
tion and discharge from coordinated specialty care (CSC), a
program that provides early intervention in psychosis, has
emerged as an important focus area for program adminis-
trators, clinicians, and policy makers. To explore existing CSC
policies and practices and to understand frontline provider
and client views on discharge, the authors conducted a
comprehensive analysis of staff and client interview data
from the Mental Health Block Grant 10% Set-Aside Study.
Methods: Data from 66 interviews with groups of CSC
providers and administrators representing 36 sites and
22 states were analyzed, as well as data from interviews with
82 CSC clients at 34 sites. Transcripts were coded by using
systematic content analyses.
Results: Analyses of data from providers and administrators
showed the heterogeneity of CSC program practices and
strategies regarding discharge and highlighted a range of
concerns related to postdischarge service accessibility and
quality. Analysis of data from client interviews reected the
heterogeneity of transition challenges that clients confront.
A signicant number of participants reported concerns
about their readiness for discharge.
Conclusions: CSC discharge policies and practices vary
across CSC programs and states. Frequent clinician and
client concerns about optimal program length, transition,
and postdischarge services highlight the importance of
sustained policy and research efforts to develop evidence-
informed practice guidelines and possible modications to
the time-limited CSC model that currently dominates the
eld.
Psychiatric Services 2020; 71:487497; doi: 10.1176/appi.ps.201900514
First-episode psychosis (FEP) is a serious mental health
condition with historically poor long-term outcomes, par-
ticularly for young people with nonaffective psychosis (1, 2).
Fortunately, the development of specialized services for
early intervention in psychosis (EIP)widely referred to as
coordinated specialty care (CSC) in the United States (3, 4)
has substantially improved 2- to 3-year postonset outcomes
(59). However, both premature disengagement (10) and
longer-term postdischarge erosion of the advantages of
EIP/CSC participation relative to status quo services re-
main signicant concerns (8, 1114). In particular, concerns
about postdischarge outcomes and uncertainty regarding
optimal length of EIP/CSC services have prompted a series
of recent extensiontrials (1517) as well as international
dialogue about the long-term impact of variables such as
duration of untreated psychosis and the quality and in-
tensity of EIP/CSC program components focused on
functional and vocational recovery in addition to symp-
tom remission (1821).
To date, studies of EIP/CSC client discharge outcomes and
trajectories have been limited in number and predominantly
conducted in the context of programs located outside the
United States. This is particularly true with respect to
HIGHLIGHTS
Current policies and practices regarding discharge and
transition from coordinated specialty care (CSC) pro-
grams vary across the United States, and the number of
programs with formal step-down or discharge services is
very limited.
Both clinicians and current and former clients expressed
concerns about postdischarge service availability and
quality.
The development and rigorous evaluation of discharge-
related programming and step-down or extension strate-
gies are critical priorities for the eld.
Psychiatric Services 71:5, May 2020 ps.psychiatryonline.org 487
SPECIAL ARTICLE
cliniciansand clientsperspectives. In fact, to the best of our
knowledge, we are aware of only three qualitative studies
two studies based in the United Kingdom and focused on
clientstransition experiences (22, 23) and one study of staff
perspectives on discharge (24). In the United States, the
heterogeneity of state and regional funding and support for
mental health services (25), fragmentation of health care
more broadly (26, 27), and diversity of EIP/CSC models,
programs, and standards (3, 28) all raise questions regarding
the circumstances and consequences of program duration
and discharge practices that international studies can only
partially address.
The analyses reported in this article focused on the sub-
jective views of two key stakeholder groups: CSC program
staff and current and former CSC clients. Primary research
goals for staff interviews were to better understand the na-
tional landscape regarding discharge and transition, the
range of transition strategies that diverse CSC programs
have developed, and concerns regarding transition. Primary
research goals for client interviews were to explore how
recipients describe their communication with CSC clini-
cians about discharge and their concerns and perceived
readiness for discharge.
METHODS
Design, Sampling, and Procedure
The research described in this article is part of a larger,
longitudinal, mixed-methods study evaluating the imple-
mentation and outcomes of CSC services that are supported
at least in part by Mental Health Block Grant (MHBG)
10% set aside funds (29). Additional details regarding study
methodology and design are provided in an online supple-
ment to this article.
Study sites. The study includes 36 sites implementing ser-
vices with varying levels of delity to the CSC model, se-
lected from among more than 200 CSC programs across
the United States. Sites were selected in collaboration with
federal sponsors and were chosen to ensure diversity in
geographic distribution, specic program model (OnTrack,
EASA, NAVIGATE, etc.), and urbanicity.
Recruitment and interview procedures. Data presented here
were collected during two visits to each site, conducted be-
tween January and June 2018 and between January and May
2019. Site visits included semistructured interviews with CSC
team members and administrators and between one to four
CSC clients per site. Clients were selected by local program
staff without imposition of inclusion or exclusion criteria, and
demographic data collection was limited to age, gender, race-
ethnicity, and length of time in CSC services. All interviews
were conducted by experienced mental health services re-
searchers, including several authors (TD, PG, AR, and DS).
Interview protocols were developed by the MHBG eval-
uation team, incorporating feedback and suggestions from
governmental sponsors, expert advisors, and partners. Ques-
tions covered a range of areas related to CSC program
implementation, including explicit questions regarding tran-
sition practicesnamely, Does the program have a step-down
program or any services for clients after they have participated
in the program? Has the program had any clients graduate
or leave the program over the past year, andif so, did they leave
because they were doing well, because they hit some type of
eligibility limit, or some other reason? Was there anything
that the program did to help with the transition? Does the pro-
gram have any contact with clients who have left the program?
For clients, the two primary questions asked were, Is
there a set length of time that the participant will be enrolled
in the program? and What does the client think it will be like
when he or she is no longer part of the CSC program? If
participants were nearing the end of their time in the pro-
gram, they were also asked how they felt about the idea of
moving on (e.g., whether they felt ready) and whether any-
one was helping them connect with services.
Sample characteristics. For providers, individual de-
mographic characteristics were not collected. A total of
338 CSC team members and administrators participated in
interviews across the 36 sites and two time points. At each
site, between three and 11 staff and administrators partici-
pated in each interview, with participants potentially in-
cluding care managers orcase managers, nurses, psychiatrists,
supported employment and education specialists, clinicians,
support staff, peer specialists, and individuals in a range of
administrative roles. For the discharge and transition sections
of the interviews included in this report, discussions and
comments from a total of 108 staff were actively coded (i.e., in
many interviews, additional staff were present but did not
actively weigh in or speak about these focus issues, and thus
they did not provide material that could be coded).
Eighty-two clients (45% female, N=37) at 34 sites
responded to questions about transitions. Clients were Cau-
casian (57%, N=47), African American (36%, N=29), Asian
American (5%, N=4), American Indian/Alaska Native (1%,
N=1), and individuals identifying as two or more races (1%,
N=1), with 21% (N=17) reporting Latino or Latina ethnicity.
The mean6SD age of client respondents was 22.564.46
(range 1433). The length of time enrolled in the CSC pro-
gram at the time of the interview ranged from 1 month to
4 years, and six participants were either close to discharge or
had already been discharged. Two of the discharged clients,
although they had transitioned from initial CSC services, were
actively enrolled in an early psychosisspecicstep-down
continuation program at the time of the interview.
Data Analysis
Using interviews across both data collection time points,
we extracted all material containing responses to protocol
questions concerning transition and discharge as well as
additional discharge-relevant material arising in the context
of other protocol topics. To verify that all text relevant to
488 ps.psychiatryonline.org Psychiatric Services 71:5, May 2020
CSC DISCHARGE, TRANSITION, AND STEP-DOWN POLICIES AND PRACTICES
transition was captured, systematic key term searches were
also conductedi.e., searches for key terms such as step-
down, transition, graduation, discharge, and other related
wordsand the surrounding narrative was reviewed in or-
der to verify that no relevant text was missed. Extracted
sections were then coded by using systematic content anal-
ysis (30, 31), with the research goal of characterizing all
information relevant to transition and discharge.
A priori codes were generated on the basis of both in-
terview protocol questions and the teams understanding of
discharge-related CSC issues (e.g., use of discharge planning
tools). Additional (emergent) codes were generated through
the comprehensive coding of approximately a third of par-
ticipant transcripts (until code saturation was reached).
In some cases, uncertainties in the interviews prompted
additional triangulation work. For example, ambiguous re-
sponses to questions regarding state or regional discharge or
length-of-service policy prompted the research team to re-
view existing administrative policy (including manuals and
policy documents where available) or to clarify policy with
appropriate administrative leadership.
Following a multiphase, iterative code development
process, the combination of a priori and emergent codes was
piloted on additional transcripts prior to nalization by the
coding team (NJ and BG). Because we wished to ensure code
reliability, 15% of transcripts were blind double-coded; code
disagreement was minor (less than 10%), primarily consist-
ing of missed codes rather than disagreement about correct
application of existing codes. The qualitative software pro-
gram Atlas.ti (32) was used for all coding and initial analysis,
and codes were exported to quantitative software (Stata
[33] for clinician data and SPSS [34] for client data) for the
computation of frequencies.
For staff interview analyses, we sought to provide both
code frequencies, where appropriate, and narrative report-
ing intended to characterize the nature and range of par-
ticipant perspectives. Wherever thematic frequencies are
provided, a denominator is included, with the denominator
varying relative to the number of interviews in which ma-
terial relevant to the code in question was present. For client
interviews, frequency reporting includes both overall fre-
quencies as well as further breakdowns by length of time
in CSC services at the time of the index interview. This
breakdown is reported because of the very different impli-
cations of, for example, perceived lack of understanding of
discharge policies after only 2 weeks in CSC versus 2.5 years.
For these purposes, clients were grouped into four service
length categories: enrolled for 012 months, enrolled for
1323 months, enrolled for $24 months, and at discharge or
already discharged.
RESULTS
Staff Themes
Codes developed for the staff interviews were grouped into
three higher-level domains, reported as subsections below:
policies and practices related to discharge and transition,
discharge strategies, and clinician experiences and concerns.
Policies and practices related to discharge, transition, and
step-down. Table 1 summarizes policies regarding planned
or maximum program length for all 36 CSC sites. A 2-year
target, with exibility to extend services, was the modal
response. Variations in exibility were considerable, with
some programs able to extend services for a few weeks
or months, whereas others were able to extend in xed
6-month increments. Several sites noted greater exibility
when the program was below census. Three of the 36 pro-
grams were described as abandoning an initially rigid 2-year
limit and adding exibility in response to clientsextended
service needs (Its not 24 months anymore. It was. We were
limited at rst. But now since the research is starting to
show that people are beneting from 3 to 5 years of service,
were keeping people longer.). Conversely, three programs
that initially allowed services beyond 2 years subsequently
established a 2-year limit to more strongly emphasize a
transitional focus.
Only one of the 36 programs was described as having a
time-limited effort to assess postdischarge outcomes
through informal qualitative interviews with two client co-
horts. Staff at one additional site mentioned quasi-systematic
follow-up to ensure that clients had successfully engaged
with other services (We check in [with discharged clients]
every once in a while to see how things are going.) Although
staff of other programs described occasional informal
contact with selected discharged clientsseeing clients at
agencywide events, for example, or at CSC programhosted
reunionsthese interactions provided, at best, a very partial
window into postdischarge trajectories.
Discharge and transition strategies. Although staff at only
two programs described early psychosisspecicpost-
discharge services, sixteen were able to refer clients to
within-agency programs of varying intensity. In six of these
16 cases, programs were also able to facilitate ongoing
treatment from one or more members of the clients CSC
team. For example, one staff member said, A lot of our
clients once they discharge from the program continue to
see the exact same prescriber and therapist. ...Itjust
wouldnt be as part of the [CSC] program anymore.Another
staff member noted, When we say graduate,a lot them will
continue to see the [same] psychiatrist for medication, but
that might no longer be a part of the program because they
will only be receiving one service.
Although continuity predominantly centered on thera-
pists or psychiatrists, staff at one program described the
ability and capacity to provide indenite supported educa-
tion and employment services for clients who had graduated
or been discharged. Of the 16 programs that were able to
refer clients to within-agency programs, all nevertheless
described discharging clients to outside services at least
some of the time. In some cases, this was based on client
Psychiatric Services 71:5, May 2020 ps.psychiatryonline.org 489
JONES ET AL.
needs or the availability of appropriate within-agency ser-
vices; for example, one agency could place transition-age
youths internally but not clients who were age 25 or older.
CSC staff described a range of strategies and tools
designed to ease the transition. Three notable examples are
described here. First, some programs used specic struc-
tured or semistructured tools or checklists, completed with
clients prior to discharge. Some of these procedures in-
cluded advance crisis planning or advance directives and
collaborative development of a plan for accessing diverse
postdischarge services across service domains (housing,
medications, and employment). Second, some CSC staff
described in-person linkage and hand-off prior to discharge
i.e., CSC clinicians would accompany clients to initial
meetings with prospective postdischarge clinicians or pro-
grams, ensuring client satisfaction with new services prior to
nalizing their discharge. Third, a number of teams de-
scribed a systematic step-down process prior to discharge,
typically described as spanning 4 to 6 months, in which CSC
services were gradually tapered in order to facilitate in-
creasing autonomy and self-reliance as well as adjustment to
a lower level of clinical support. For example, a program
might slowly reduce the frequency of therapy or case man-
agement or taper off certain program components com-
pletely. Virtually all CSC teams remarked on the highly
heterogeneous nature of FEP populations. Transition-
relevant aspects of heterogeneity discussed included the
need for diverse postdischarge servicesfor example, ser-
vices designed to support both Medicaid and privately in-
sured clients, as well as a mix of residential, higher-intensity,
and lower-intensity services. Many staff noted, for example,
that some clients might need and want only sporadic med-
ication management after discharge, whereas others would
require therapeutically intensive residential or day pro-
grams. In addition, many clinicians emphasized variations in
available family support and social capital as having an im-
pact on discharge planning and client prognosis. Heteroge-
neous responses to treatment affected service duration.
Providers at multiple sites described a subset of clients with
transient or highly treatment-responsive symptoms who
could be effectively discharged after as little as 6 months,
whereas others, even after 3 or 4 years, continued to expe-
rience debilitating symptoms or functional limitations that
required intensive ongoing care.
Clinician discharge experiences and concerns. Most program
staff expressed at least some concerns regarding post-
discharge services and client trajectories. These concerns
were place specic and involved strengths and weaknesses
of programming in their region. Staff from several programs
provided anecdotes of clients who had been doing very well
when they left the program only to relapse. Staff at one
program described having concerns with clientswell-being
and access to services after conducting an informal effort to
contact several clients after discharge:
We did kind of an informal calling back to say like, Hey, how
are you doing? Whats happening?and almost nobody had
continued in outpatient care. Its a handful, maybe two or
three [out of 20 successfully contacted]. And those were the
ones with more active family members. They expressed
several things. One, that none of the programs they went to
were ever like [CSC program] and they wanted to come back
to [CSC]. . . . And more than 50% have already dropped out of
the care that they had been connected to: they couldnt get
the appointments. So, the desire to get care was there, but
they were dissatised with what they were able to get.
Table 2 summarizes other specic areas of concern, often
based on cases in which the program had been alerted to
postdischarge outcomes for selected clients.
Although concerns of various kinds were common, with
many teams expressing an overall preference for a service
period signicantly longer than 2 years, others emphasized
the importance of keeping CSC programs transitional in
order to prevent potentially harmful engulfmentin a
patient role. Three sites reduced their service length for
this reason. Other staff, speaking in this vein, emphasized
TABLE 1. Policies regarding planned or maximum program length at 36 coordinated specialty care programs
Programs
Program length Description and context N %
2-year target with exibility to extend on a case-by-
case basis
Program target is 2 years, but the program is able to extend the
length of service for clients in need of extended services
16 44
Fixed 2-year service limit, very limited ability to extend Providersability to extend services is very proscribed 4 11
Expectation that clients will average 2 years in the
program; no xed limit
General expectation is that most clients will require 2 years, but
this is not framed as a targetor goal,and there is no upper
limit on services
38
Maximum 3-year service period Program staff described the program as of 3 years in duration,
or they identied 3 years as the upper limit
411
Program serves clients beyond 3 years Program staff reported an expectation that services may last
more than 3 years, without specifying an exact target
26
5-year service period Regional guidance clearly species that services should be
provided for up to 5 years
411
Indenite service period; no upper limit on service
eligibility
Program is new or has not yet developed a discharge policy, or
staff reported both no upper limit and no expectations or
target for service duration
38
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CSC DISCHARGE, TRANSITION, AND STEP-DOWN POLICIES AND PRACTICES
differences between ongoing long-term medication man-
agement (which might be desirable or necessary in the long-
term) versus therapy. For example, one staff member noted,
I dont think therapy should be lifelong. It should be one of
your goals, but to set you in that direction. With this pro-
gram, [CSC], lets make sure youre well set in dealing with
your symptoms. . . . Set a foundation for those goals and let
you go on your way.
Client Themes
Client themes were grouped into four high-level domains:
client-provider discharge planning, client discharge aware-
ness, perceived readiness for discharge, and concerns and
feelings about discharge. Table 3 summarizes higher-level
themes within each domain as well as lower-level codes
under each theme, including example quotations. Table 4
provides the number of interviews in which each domain
was mentioned and the frequency with which specic codes
were discussed, with a further breakdown by length of time
spent in CSC services at the time of the index interview.
Overall, client reports of team communication regarding
program time limits and discharge planning were quite
varied, as were feelings regarding readiness for discharge
and associated concerns. Even among those already served
for 2 or more years or approaching discharge, a substantial
minority reported fears and discomfortfor example, feeling
unprepared or distressedand concerns about the implica-
tions of losing valued supports and structure. One partici-
pant, for example, compared current CSC stafng to
projected future services: Any doctors [in standard
TABLE 2. Programs (N=36) in which clinicians expressed concerns about policies and practices related to discharge and transition,
with example quotations
Programs
Concern N % Example quotation
A 2-year service time frame is inadequate 9 25 Two years is not enough for a lot of people to develop the insight
that they need to be able to be independent and understand that
they will need some kind of ongoing treatment.
Area services not recovery oriented 7 19 For step-up services postdischarge, we can send clients to [an
assertive community treatment or an intensive case
management] team, [but] they are very depressing, and they feel
like the opposite of recovery. To the participant, they feel like a
step in the wrong direction. Our participants never stay with
those programs, I feel like, nor would I want them to, because
theyre sort of like a holding place.
Disengagement or discontinuation of
treatment or medication after discharge
514Someone could be in this program functioning beautifully . . . but
then once they leave . . . they lose it. Suddenly they think they
dont need meds anymore . . . and no ones there to catch them. .
..Weve had a lot of really heartbreaking cases like that.
Difculty of transition to status quo services
after initial experience of high-quality CSC
411The quality of treatment in [our city], and I would imagine in a lot
of these large urban areas, is just not good. And so, its not good
by itself, and then its really not good when youve had such an
amazing program like this wrapped around you for so long. You
know youre going somewhere thats not good. You feel it as
soon as you walk in the door, the smells, the paint job, the
deterioration of the facilities, the staff are grumpy and not
interested.
Shortage of and limited access to psychiatrists 4 11 The other piece is just in terms of resources, going back even
internally into our agency, so going back to adult services, there
can often be a shortage in psychiatry.
Cost of care, particularly for privately insured
(but not wealthy) young adults
411For a 19-year-old having to pay that much money on medication,
thats a lot . . . [plus] copays for therapy, and . . . go[ing] from
coming in whenever [they] need and want to, and getting lots of
support, and not paying copays, to private insurance copays.
Access to clozapine and long-acting
injectables
38And a lot of people are on clozapine ...orattheinjection clinic.
So, if thatll have to change in addition to who they were seeing,
it would just be a lot much more complex to coordinate and to
nd places that have those similar services.
Access to psychiatrists able or willing to
prescribe antipsychotics
222Its a super big challenge getting a primary care or a private
psychiatrist to continue medication. Those types of medications
are really just specic to community mental health centers,
primarily. Thats where the bulk of those types of physicians are.
To get someone with Medicaid connected to a private
psychiatrist in a community thats going to provide an
antipsychotic is pretty unlikely. Theres a very low availability of
those kinds of doctors. Thats where our clients get stuck.
Psychiatric Services 71:5, May 2020 ps.psychiatryonline.org 491
JONES ET AL.
TABLE 3. Themes and lower-level codes related to discharge and transition identied during interviews with clients at 34 coordinated
specialty care programs, by domain
Theme and code Example quotation
Client-provider discharge planning
Discussion of discharge plan
Plan discussed Whats nice about [discharge] is [staff] and I are talking about it. We are addressing it. What
are our future long-term goals. . . ? So yeah, I mean, were addressing the outcomes and
future now, which is good instead of just saying, Oh, 2 years is done. Youre on your
own.Its not beating around the bush or anything.
Plan not discussed Interviewer: And have you talked at all about not being in the program, because youre
going away to school?Client: We havent talked about whats going to happen after I
go to school and [have to leave the program].
Discharge awareness
Awareness of discharge policies regarding
time limit
Unaware or didnt know of any service
limit or related policy
[How long I can stay is] a good question because I have no idea. I was thinking about that
myself. I have no idea how long this is going to continue for. Im not really sure how that
works.
Aware of specic service limit Its a 2-year program.
Aware and believes there is not a limit No. Theres not [a time limit]. I think as long as its helpful. I mean, its not like my diagnosis
is going away anytime soon. So, Ill probably be in the program for the foreseeable
future.
Perceived readiness for discharge
Ready for discharge
Feels condent, prepared, ready Honestly, I feel like this was a very good foundation. So, I feel like now that Ive been really
educated in many ways, that I feel like I can do it on my own.
Not ready for discharge
Doesnt feel ready, does not want to be
discharged
Yeah, Im actually being told that Im done with the program. Ive completed the program
and that a different program is going to have to take over. So, Im a little stressed out
about that. How can I have completed and Im not fully recovered? . . . I havent been
assisted with that [other services beyond the program]. Ive only been asked questions.
Concerns and feelings about discharge
Positive feelings
Fine, okay, content, good Its just like Ill be done with it, but I wont be scared because Ill be facing it still with my
family. Ill have family and loved ones. And Ill be better at handling situations that stress
me because of [the program].
Happy, excited, proud, hopeful I think Id be proud of myself for not only doing all that, but keeping my s**t together for
that long. Because that would be a change, yeah. I think I would just be proud of myself,
and I think Id be slightly relieved to know that maybe this is a new chapter of my life
thats starting now.
Grateful to program My doctor told me that Im going to graduate from the program in about another 3 to
4 months and Ill be happy that Im graduating, but a little bit sad because . . . itsa
transition. It is. But Im very grateful [to the program], and I cant express it enough.
Negative feelings
Sad, distressed, anxious [I feel] very, very bad. I feel very bad because Im not going to have the people and Im not
going to have the resources. So very bad.
Will miss the program; discharge viewed
as a loss
I would think I would lose like a place that I used to go to like if I couldnt come here, I
think Id lost a place I couldnt come to no mor. . . . I think I would feel like it was a loss.
Ambivalent feelings
Sad or will miss it, but also sees moving
on as a positive step
Itd be a little sad, cause I feel like this is my new community. But all things go, and all
things change, so itll be like nding a new shell.
Uneasy or unsure; may or may not turn
out well
Sometimes I do feel like Im ready to move on, but then I dont feel like Im ready
to move on.
Vague feelings
Unsure how he or she feels Interviewer: What do you think itll be like when youre not in the program anymore?
Client: I dont know. I honestly dont know.
continued
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CSC DISCHARGE, TRANSITION, AND STEP-DOWN POLICIES AND PRACTICES
treatment] . . . theyre more, I dont know, they see their
patient. Here they have a lot of resources like occupational
therapy and all that. And there it [will be] more just like
talking to the doctor for 20 minutes and then going home.
Both of the clients who were interviewed after discharge
were currently being served in a specialized early psychosis
extension program, and both planned to remain in services
for several more years (after having already received 2 or
more years of initial CSC).
Although loss of program structure clearly undergirded
many clientsdiscomfort, attachment to particular clinicians
and the distressing prospect of losing these relationships
were frequently mentioned: I told them that I didntlike
the fact that I wasnt going to be able to reach out to them
anymoreaftertheprogram....Ididntlikethefactthat
after my time here, like after the 2-year mark, I cant reach
out to [team members] because of condentiality rea-
sons. . . . I dont like that.Many clients also appeared to
view discharge from CSC as entailing the permanent loss of
access to close therapeutic relationships, whether because of
cost, access, or standards of care.
Almost half (43%) of the 30 clients who were explicitly
asked about provider communications regarding future dis-
charge reported that they were unaware of discharge policies
and had not discussed discharge with providers, representing
ten of the 36 evaluation sites. Among these clients, a quarter
had already been served for more than a year and 38% for
2 years or more. In nearly all cases, providers working in the
programs in which these clients were served described early
and proactive discussion about discharge.
Other instances of discordant perspectives between
providers and clients were also present. Clinicians, for ex-
ample, noted instances in which clients might feel prepared
for discharge but in fact were not or, conversely, feel un-
prepared when, from the providerspoint of view, they were
ready. One of the providers involved in the cohort follow-up
effort described above noted, [Some former clients] said
they were ne, and now Im seeing them in the home and
they are not ne. . . . Theyre saying, Everythings great, Im
great, Im doing wonderful. I just started a business.And
then their parents are like, Yeah, they made that business
up. Its not a real thing’”
DISCUSSION
Main Findings
These ndings underscore the tremendous variability of
discharge practices and policies across the study sample,
including a wide range of program lengths (between 2 and
5 years), and an array of discharge strategies and internal
capacity for continuity of care. Only two of the 36 sampled
programs provided targeted postdischarge extension or
step-down services, and only one was described as having
regular, clinically oriented follow-up to ensure (or assess)
the success of the transition. Concerns about discharge and
the accessibility and quality of postdischarge services were
widespread among clinicians, and a signicant proportion of
clients expressed apprehension or sadness about discharge,
including clients already served for more than 2 years or at the
point of discharge. Data also highlight the heterogeneity of
client needs and experiences, with implications for ongoing
improvement and renement of CSC and post-CSC services.
Clinical Implications and Future Directions
The overarching goals of early detection and early in-
tervention include a fundamental redirection of the histor-
ically poor prognosis of individuals with early psychotic
disorders (3537) and the transformation of initial systems of
care (38). Follow-up research (8, 1014) and associated step-
down and extension trials (1517) have raised important
concerns about the durability of the initial advantages of
CSC over conventional treatment and the best strategies for
sustaining improved long-term outcomes. Although many
practice guidelines and performance-monitoring efforts
include at least some guidance regarding transition (3942)
in some cases providing genuinely substantive advice (39)
empirical substantiation of best practices remains scarce
(43). Our ndings underscore the absence of a unied na-
tional strategy for CSC transition in the United States and,
presumably, other countries with distributed CSC services.
TABLE 3, continued
Theme and code Example quotation
Specic areas of concern
Postdischarge service availability in
clients native language
Im going to miss it because of the help Ive received here. And, I dont know how its
going to be in the next program. Here they have the therapy in Spanish.
Loss of supports still perceived as needed What if I need the support or something from them? Plus, I dont just look at them as
work, I look at them like somebody I can depend on or something. Even though Im
trying to be independent, like I can depend on them or something.
Loss of structure Right now, Id rather not have to [discharge]. Id like to continue the program. Im
somebody that likes just to keep it the way it is, the schedule and everything. I mean, it
helps me just to be able to come here and be able to talk to people and stuff like that. So,
Im somebody that would vote to stay indenitely if need be.
Inability to handle future stressors
without the program
Just because, like, I dont think Ill ever be off my medication, because when the episodes
happen, I cant tell if its real or not. And I come from a very religious family, and so when
stuff happens if I didnt have this program, I dont know what I would do.
Psychiatric Services 71:5, May 2020 ps.psychiatryonline.org 493
JONES ET AL.
Our ndings also highlight the role of transition and post-
discharge services and the importance of incorporating ex-
plicit service quality metrics related to discharge into future
follow-up studies (43).
Overall, more research on transition and discharge is
essential, ideally including comparative effectiveness studies
designed to discern which of the many strategies discussed
in our interviews (and the broader literature [2224])
should guide clinical policy, including the development or
renement of delity tools. Ideally, in this context, practice-
oriented research initiatives would also make an explicit
commitment to unpacking the implications of national, re-
gional, and client-level heterogeneity and how best to craft
and nance models that preserve the initial benets of
CSC programs while also titrating supports to foster in-
dependence. Key considerations include local non-CSC
service availability and nancing and, at the client level,
age (youth versus adult), degree of disability, and relative
socioeconomic disadvantage.
Discrepancies between client and provider perceptions
regarding communication and program policies related to
discharge tentatively suggest that even in cases in which CSC
TABLE 4. Frequency with which themes and lower-level codes related to discharge and transition were mentioned during interviews
with clients in coordinated specialty care, by domain and time in the program
Months in program
Domain
Theme or
code mentioned
b
Discharged
or at
Domain, theme, and code mentioned
a
N%012 1323 24 discharge
Client-provider discharge planning 30 5 7 12 6
Discussion of discharge plan
Plan discussed 17 57 0 4 7 6
Plan not discussed 13 43 5 3 5 0
Awareness of discharge policies regarding
time limit
67 26 16 19 6
Unaware or didnt know of any service limit
or related policy
15 22 7 3 5 0
Aware of an existing limit or discharge policy 52 78 19 13 14 6
Aware of specic service limit 27 52 9 11 6 1
Aware and believes there is not a limit 25 48 10 2 8 5
Discharge readiness 31 7 6 13 5
Ready for discharge
Feels condent, prepared, ready 14 45 3 3 6 2
Not ready for discharge
Doesnt feel ready, does not want to be
discharged
17 55 4 3 7 3
Concerns and feelings about discharge 47
Positive feelings 17 36 9 1 3 4
Fine, okay, content, good 5 29 3 0 0 2
Happy, excited, proud, hopeful 6 35 3 1 1 1
Grateful to program 6 35 3 0 2 1
Negative feelings 15 32 4 3 4 4
Sad, distressed, anxious 8 53 2 1 3 2
Will miss the program; discharge viewed
as a loss
747221 2
Ambivalent feelings 15 32 3 4 6 2
Sad or will miss it, but also sees moving on
as a positive step
960323 1
Uneasy or unsure; may or may not turn
out well
640023 1
Vague feelings; unsure how he or she feels 8 17 6 1 0 1
Specic areas of concern 20 43 8 5 4 3
Postdischarge service availability in clients
native language
2102000
Loss of supports still perceived as needed 8 40 2 3 2 1
Loss of structure 4 20 2 1 0 1
Inability to handle future stressors without
the program
630212 1
a
N of interviews (N=82) in which the domain was mentioned.
b
Percentages for themes are based on total mentions for the overriding domain, and percentages for codes are based on total mentions of the overriding
theme, with the exception of percentages for codes in the domain of discharge readiness and client-provider discharge planning, which are based on total
mentions of the domain.
494 ps.psychiatryonline.org Psychiatric Services 71:5, May 2020
CSC DISCHARGE, TRANSITION, AND STEP-DOWN POLICIES AND PRACTICES
programs are able to articulate well-developed policies and
practices (in interviews), program clients may remain con-
fused or unclear about what to expect. Future research and
program development efforts would thus ideally include a
strong focus on understanding clientssubjective experience
not only of discharge itself but also their advance knowledge
of and preparation for discharge. Integration of participatory
methods may be critical. Differences between provider and
client perspectivesespecially insofar as they may affect
program-level decisions to extend care or move forward with
dischargealso raise important questions with respect
to shared decision making and client self-determination,
which feature as key components of CSC programs (32).
Who, we might ask, for example, should ultimately drive
decisions regarding the timing of discharge?
A second important issue is the extent to which ongoing
improvements to CSC programswithin a standard 2- to
3-year treatment windowcould potentially affect long-
term outcomes rather than (or in addition to) the extension
of services or development of postdischarge step-downs.
Although we lack follow-up outcomes data, potential ap-
proaches in the published literature include ramped-up
supported education and employment services (18, 44) and
CSC modications designed to improve outcomes for high-
risk subgroups, including youths and young adults experi-
encing or at risk of homelessness (45) and those identied
early in CSC as likely to disengage from services (46). Con-
versely, we might argue that CSC represents a level of quality
that should in fact characterize mental health services in
general, as underscored by both staff and client concerns
regarding the values and offerings of postdischarge services.
Finally, as evidenced by both clinician and client inter-
views, the tension between helpful structure and support
and a potentially detrimental dependency on services can be
challenging to navigate. For example, as we described, a
large number of clients alluded to the value of therapeutic
relationships and their desire to continue rather than move
on from these relationships. Philosophical and ethical ten-
sions surrounding the trade-offs and impact of long-term
versus short-term, time-limited therapy have been a subject
of debate and disagreement for many years (4749), albeit
with contemporary insurance policies strongly favoring (if
not requiring) time-limited therapeutic interventions (50).
Pronounced differences between clients in the level of on-
going disability or distressand the time needed to lay the
foundation for recoveryfurther compound the challenges
of crafting policies and supports capable of meeting diverse
short-term as well as longer-term needs. An alternative
treatment model, such as is used in the Housing First model
of supported housing (51, 52), might continuously titrate
services to an individuals wants and needs for an unlimited
period rather than transitioning the client to alternative
services. This would require stafng models different from
those that are currently used, and these models would have
to strive to help clients achieve as much independence from
services as possible. Again, research concerning these issues
would ideally be grounded in a careful consideration of
multiple stakeholder preferences and perspectives (5355)
andorientedtowardtheinvestigationofmechanisms
whereby interventions can facilitate long-term healing as
well as short-term effectiveness (5659).
Limitations
Major strengths of the analyses presented here include the
number of programs and states included in the evaluation
sample, and the projectslarge multistakeholder sample.
Nevertheless, questions and discussion about discharge and
transition constituted a relatively small piece of a compre-
hensive and multifaceted evaluation. In any given interview,
transition-specic discussion may have spanned as little as
510 minutes, falling short of the depth of coverage that
would have been enabled by a research project more ex-
clusively focused on the topic of discharge and transition.
Furthermore, depth of discussion varied considerably across
interviews, and a signicant proportion of interviews did not
include discussion of important thematic domains. Although
the number of client participants (N=82) was high overall,
interviews included only one to four clients per site, who
were selected by program staff, raising questions about
potential selection bias. Similarly, the sites selected do
not necessarily represent the much larger population of U.S.
CSC services, and the overarching motivation for the study
(federally sponsored evaluation of CSC services) may have
biased provider narratives. Future efforts to unpack client
experiences and priorities would ideally use careful sam-
pling strategies to capture the range of experiences likely
present even among current or former clients within the
same program and would also ensure adequate representa-
tion of participants with varying levels of disability, pre-
morbid accomplishments, socioeconomic backgrounds, and
amount of family support.
The MHBG 10% Set-Aside Study and the data reported
here also did not include family or caregiver perspectives.
Given the critical role that families often play in supporting
loved ones with psychosis (60, 61), future efforts would
ideally fully integrate family perspectives and priorities with
respect to discharge policies (and communication of those
policies) as well as transition and postdischarge supports.
Another critical but unrepresented group were clients who
opted to withdraw or disengage from CSC services (62, 63).
From a population health perspective, the ultimate success
of CSC depends not only on sustaining the gains of those
who opt to remain in CSC programs for their full duration
but also on working to ensure the sustained well-being of
those who disengage from CSC programs in their current
form.
CONCLUSIONS
Internationally, concerns regarding the relative loss of ini-
tial treatment advantages of early intervention services
are widespread. As our research documents, U.S. clinicians,
Psychiatric Services 71:5, May 2020 ps.psychiatryonline.org 495
JONES ET AL.
both academic and community-based, share these concerns,
asin more indirect waysdo many CSC clients. Although
programs have developed a range of strategies for support-
ing clients during and after discharge, implementation varies
considerably, and research capable of guiding best practices
is lacking. Moving forward, multistakeholder-informed
intervention and applied services research on discharge,
transition, and step-down should be prioritized.
AUTHOR AND ARTICLE INFORMATION
Department of Psychiatry and Behavioral Neurosciences (Jones) and
Department of Psychology (Gius), University of South Florida, Tampa;
Westat, Inc., Rockville, Maryland (Daley, George, Rosenblatt); National
Association of State Mental Health Program Directors, Alexandria, Vir-
ginia (Shern). Send correspondence to Dr. Jones (genevra@usf.edu). The
rst two authors contributed equally to this article.
Research reported here was supported by the Substance Abuse and
Mental Health Services Administration and the National Institute of
Mental Health (task order HHSS283201200011I/HHSS28342008T, ref-
erence 283-12-1108).
Dr. Jones reports serving on an advisory board for Mindstrong Health.
The other authors report no nancial relationships with commercial
interests.
Received October 16, 2019; revision received December 11, 2019;
accepted January 16, 2020; published online March 19, 2020.
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... Patients identify the loss of relationships with their clinicians as particularly challenging, while care providers experience anxiety about patients' readiness to transition (Jones et al., 2020;Loughlin et al., 2019). A recent qualitative survey of 36 FES in the United States found that only two provided interventions focused on transition and step-down processes, while only one attempted regular follow-up to ensure successful transition (Jones et al., 2020). ...
... Patients identify the loss of relationships with their clinicians as particularly challenging, while care providers experience anxiety about patients' readiness to transition (Jones et al., 2020;Loughlin et al., 2019). A recent qualitative survey of 36 FES in the United States found that only two provided interventions focused on transition and step-down processes, while only one attempted regular follow-up to ensure successful transition (Jones et al., 2020). While experienced FES have compiled several useful tactics (Pollard & Hoge, 2020), we are unaware of any demonstrations of how these might be implemented within a systematic strategy to improve transitions from FES. ...
... The duration of the care model is 2 years, at which point patients are discharged to community providers to continue ongoing care as necessary. Some patients may be flexibly transitioned before or after the 2-year mark, which is comparable to the practices of other FES in the United States (Jones et al., 2020). ...
Article
Aims First‐episode services (FES) improve outcomes in recent onset psychosis, but there is growing concern about how patients fare after discharge from these time‐limited services. Methods A quality improvement approach (QI) was used to improve patient engagement in the discharge planning process (disposition), and successful engagement in care 3 months after discharge from the FES (transfer). Data from 144 consecutive discharges over 62 months are presented. A planning phase was followed by recurrent Plan‐Do‐Study‐Act cycles (PDSA) that included the introduction of proactive efforts targeting disposition planning (with patients and families) and follow‐up to facilitate transfer after discharge. Fisher's exact test was used to compare disposition and transfer outcomes across the QI phases. Results This QI approach was sustained through a three‐fold escalation in discharge volume. Transfer status at 3 months was significantly different between the pre‐ and post PDSA phases (p = .02). A greater proportion were confirmed transfers post‐PDSA (54.3 vs. 37%), but of those with known status at 3 months, similar proportions were successfully transferred (76, 73%). Patients discharged post‐PDSA were less likely to have unknown treatment status (26 vs. 51%). Disposition outcomes were also significantly improved post‐PDSA (p = .03). Patients were more likely to engage with discharge planning (69.7 vs. 48.6%) and less likely to be lost to follow‐up (13.8 vs. 25.7%), or to refuse assistance (11.0 vs. 20.0%). Conclusion This QI approach offers a feasible way to improve disposition and transfer after FES and can be built upon in efforts to sustain functional gains in onward pathways.
... To make a decision about the correct post-discharge care, a treating clinician will have to take into consideration the individual's wishes for further treatment, their likely need for further intensive mental health treatment, and the current availability and capacity of secondary care services [6][7][8] . In addition, the next care provider may often have its own eligibility criteria or diverging opinions about the need for continued specialist mental health input 9,10 . ...
... While some of these relapses and readmissions may be due to reasons beyond the control of mental health services, they may contribute to this risk through underestimation of the individuals' need for specialist mental health care, leading to an individual's deterioration and eventual relapse. Both clinicians 6,7 and individuals themselves 8 share the concern that those who have maintained good mental health during EIP with its specialist, multidisciplinary support, can relapse after EIP treatment has ended. Transition periods in psychiatry (and throughout medicine) are historically and habitually a point of high risk 13,14 . ...
... Transition periods in psychiatry (and throughout medicine) are historically and habitually a point of high risk 13,14 . Good practice discharge guidelines for EIP exist 15 , but the eligibility criteria for access to treatment can differ by region and by service capacity at the time of discharge 6 . ...
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Early Intervention in psychosis (EIP) teams are the gold standard treatment for first-episode psychosis (FEP). EIP is time-limited and clinicians are required to make difficult aftercare decisions that require weighing up individuals’ wishes for treatment, risk of relapse, and health service capacity. Reliable decision-making tools could assist with appropriate resource allocation and better care. We aimed to develop and externally validate a readmission risk tool for application at the point of EIP discharge. All persons from EIP caseloads in two NHS Trusts were eligible for the study. We excluded those who moved out of the area or were only seen for assessment. We developed a model to predict the risk of hospital admission within a year of ending EIP treatment in one Trust and externally validated it in another. There were n = 831 participants in the development dataset and n = 1393 in the external validation dataset, with 79 (9.5%) and 162 (11.6%) admissions to inpatient hospital, respectively. Discrimination was AUC = 0.76 (95% CI 0.75; 0.77) in the development dataset and AUC = 0.70 (95% CI 0.66; 0.75) in the external dataset. Calibration plots in external validation suggested an underestimation of risk in the lower predicted probabilities and slight overestimation at predicted probabilities in the 0.1–0.2 range (calibration slope = 0.86, 95% CI 0.68; 1.05). Recalibration improved performance at lower predicted probabilities but underestimated risk at the highest range of predicted probabilities (calibration slope = 1.00, 95% CI 0.79; 1.21). We showed that a tool for predicting admission risk using routine data has good performance and could assist clinical decision-making. Refinement of the model, testing its implementation and further external validation are needed.
... Once a program is up and running, there is a need to ensure sustainable reimbursement infrastructure given the nature of mental health care compensation in the US (De-Maio et al., 2015). Given this divide, repeatedly the research to date calls for further investigation of what funding mechanisms, whether private or public or come combination, can best support CSC implementation moving forward (Breitborde & Moe, 2017;Csillag et al., 2016;Dixon, 2017;Jones et al., 2020;Niendam et al., 2019). Yet, certain practices included in the CSC package; i.e., supported employment, are not covered by private insurers Content courtesy of Springer Nature, terms of use apply. ...
Article
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Coordinated Specialty Care (CSC) is a multidisciplinary team approach to providing care for young and emerging adults having their first episode of psychosis. CSC programs have expanded rapidly throughout the United States going from 12 programs in 2008 to over 160 programs a decade later. The purpose of this historical review is to document the process and conditions that led to the accelerated dissemination of these programs across the country. CSC models began in the US in the early 2000s, but nationwide expansion followed the 2008 Recovery After an Initial Schizophrenia Episode trial. As programs have grown, debates have risen about fidelity to CSC models. The challenges facing CSC programs today include lack of evidence on what are the core components of CSC and how fidelity monitoring relates to positive client outcomes.
... This literature is helpful to draw from because psychosis typically onsets during adolescence and young adulthood (Lower et al., 2015) and evidence-informed early psychosis care models are typically multidisciplinary (Dixon et al., 2018). Completion of early psychosis services has been defined as graduating to a lower level of care (Jones et al., 2020), however a systematic review of early psychosis service disengagement reports rates across studies to be This document is copyrighted by the American Psychological Association or one of its allied publishers. ...
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Objective: Increasingly, community mental health providers are implementing multidisciplinary treatment models blending child and adult evidence-based practices to boost young adult engagement. Although promising, limited research examines how and why young adults disengage from these new models. This study examines provider documentation of treatment discharges to create a more developmentally-attuned young adult service exit typology. Method: Service records of 18-25 year-olds (n = 124) who discharged from a young adult-tailored multidisciplinary treatment team over a 5-year period were analyzed. A research team conducted a systematic content analysis of discharge forms and service notes. Planned and unplanned exits emerged as primary categories, each having distinct subcategories with noted prevalent associated experiences. Results: Participants (n = 124) were enrolled between 7 days to 3.80 years (M = 11.41 months) prior to exit. Those with "planned" exits (n = 71) were enrolled longer than those with "unplanned" exits (n = 53), means respectively 13.17 versus 9.06 months. Planned exits included: transitions either to a lower, similar or higher level of care, a return to previous provider, or insurance issues. Moving outside team geographic area contributed to planned and unplanned exits. Unplanned exits were disproportionately found among participants who were Black, had justice involvement histories, and/or experienced housing instability or homelessness. Conclusions and Implications for Practice: Young adult service exits are complex; planned exits are not always positive and unplanned exits are not always negative. Provider and research use of this new service exit typology has particular implications for identifying engagement disparities-and further tailoring models to be more attractive, culturally responsive, and impactful with young adults. (PsycInfo Database Record (c) 2021 APA, all rights reserved).
... Broadly speaking, this domain and associated client narratives align with motivational frameworks for sustained behavioral change (e.g., selfdetermination theory) (26) that underscore the centrality of self-direction and autonomous motivation. Given the importance of sustaining gains both during and after discharge from CSC programs (27), the presumably deeper and more lasting benefits of the internalizing of motivation for recovery are notable. For those who endorsed change in these areas, the hope is that these clients will now leave the program motivated to continue working on their goals, even in the absence of programs providing the level and intensity of care typical of CSC. ...
Article
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Objective: This study investigated how clients of a coordinated specialty care (CSC) program for first-episode psychosis perceived how they changed while attending the program, what the most important changes were, and what mechanisms they believed helped bring about these changes. Methods: Study participants were 121 individuals (71 men and 50 women) from 35 CSC programs across 22 U.S. states. Responses to the primary questions of interest were procured through a semistructured interview. Data on the length of time in the CSC program were also obtained. The authors used systematic content analyses to analyze these qualitative data. Results: Participants reported a greater number of changes the longer they had received CSC services. Half of the participants reported improved psychiatric symptoms, and this change was the most important for almost one-third (31%; N=32) of the sample. In addition, 39% (N=45) of participants also reported improved social and interpersonal skills, changes in their attitude to and perspective on life, and more treatment engagement. Participants most frequently endorsed therapy as the mechanism underlying their improvement. Conclusions: Standardized outcome measures allow systematic assessment of clinical and functional status, but they do not provide a nuanced understanding of the underlying mechanisms or the areas of improvement most important to individual clients. The findings reinforce the value of mixed methods in both research and quality improvement efforts as well as for greater integration of patient-selected outcome measures.
... Broadly speaking, this domain and associated client narratives align with motivational frameworks for sustained behavioral change (e.g., selfdetermination theory) (26) that underscore the centrality of self-direction and autonomous motivation. Given the importance of sustaining gains both during and after discharge from CSC programs (27), the presumably deeper and more lasting benefits of the internalizing of motivation for recovery are notable. For those who endorsed change in these areas, the hope is that these clients will now leave the program motivated to continue working on their goals, even in the absence of programs providing the level and intensity of care typical of CSC. ...
Article
Full-text available
Objective: This study investigated how clients of a coordinated specialty care (CSC) program for first-episode psychosis perceived how they changed while attending the program, what the most important changes were, and what mechanisms they believed helped bring about these changes. Methods: Study participants were 121 individuals (71 men and 50 women) from 35 CSC programs across 22 U.S. states. Responses to the primary questions of interest were procured through a semistructured interview. Data on the length of time in the CSC program were also obtained. The authors used systematic content analyses to analyze these qualitative data. Results: Participants reported a greater number of changes the longer they had received CSC services. Half of the participants reported improved psychiatric symptoms, and this change was the most important for almost one-third (31%; N=32) of the sample. In addition, 39% (N=45) of participants also reported improved social and interpersonal skills, changes in their attitude to and perspective on life, and more treatment engagement. Participants most frequently endorsed therapy as the mechanism underlying their improvement. Conclusions: Standardized outcome measures allow systematic assessment of clinical and functional status, but they do not provide a nuanced understanding of the underlying mechanisms or the areas of improvement most important to individual clients. The findings reinforce the value of mixed methods in both research and quality improvement efforts as well as for greater integration of patient-selected outcome measures.
... Although these programs utilize assertive engagement strategies designed to connect with individuals and individualized interventions delivered according to their needs and preferences, many people receiving these services leave treatment sooner than what would be recommended by the treatment team (4). While there is no consensus on how long EIS programs should last, many provide services for 2 to 3 years (5). Although treatment response to these services is heterogeneous, it is ordinarily assumed that individuals leaving services before 12 months who otherwise continue to meet criteria may have stopped services earlier than indicated for maximizing treatment effects (6). ...
Article
Objective: Although specialized early intervention services (EISs) for psychosis promote engagement in care, a substantial number of individuals who receive these services are discharged from care earlier than expected. The main goal of this study was to examine predictors of early discharge in a large sample of individuals enrolled in an EIS program in the United States. Methods: This cohort study (N=1,349) used programmatic data from OnTrackNY, an EIS program that delivers evidence-based interventions to youths across New York State experiencing a first episode of nonaffective psychosis. The main outcome was "early discharge," which was operationalized as discharge prior to completing 12 months of treatment. Cox proportional hazard regression models were used to assess the association between sociodemographic, clinical, and support system predictors and early discharge. Results: The estimated probability of discharge before 1 year was 32%. Participants who at baseline had poor medication adherence, had no health insurance, were living alone or with nonparental family, or were using cannabis were at higher risk of leaving services within the first 12 months after enrollment. Individuals with higher social functioning were at lower risk of being discharged early from OnTrackNY, but those with higher occupational functioning were at a higher risk. Conclusions: Predictors of early discharge from EISs largely overlapped with previously identified predictors of poor prognosis in early psychosis. However, the association between early discharge and high occupational functioning indicates that trajectories leading up to discharge are heterogeneous.
... One of the most interesting findings of the Jones et al. (1) study of more than 30 U.S. coordinated specialty care (CSC) programs for first-episode psychosis is concern about the appropriate length of service delivery. This area of concern in turn raises the question, What kind of services should follow "graduation" from CSC? ...
Article
Background Psychiatric hospitalization is a major driver of cost in the treatment of schizophrenia. Here, we asked whether a technology-enhanced approach to relapse prevention could reduce days spent in a hospital after discharge. Methods The Improving Care and Reducing Cost (ICRC) study was a quasi-experimental clinical trial in outpatients with schizophrenia conducted between 26 February 2013 and 17 April 2015 at 10 different sites in the USA in an outpatient setting. Patients were between 18 and 60 years old with a diagnosis of schizophrenia, schizoaffective disorder, or psychotic disorder not otherwise specified. Patients received usual care or a technology-enhanced relapse prevention program during a 6-month period after discharge. The health technology program included in-person, individualized relapse prevention planning with treatments delivered via smartphones and computers, as well as a web-based prescriber decision support program. The main outcome measure was days spent in a psychiatric hospital during 6 months after discharge. Results The study included 462 patients, of which 438 had complete baseline data and were thus used for propensity matching and analysis. Control participants ( N = 89; 37 females) were enrolled first and received usual care for relapse prevention followed by 349 participants (128 females) who received technology-enhanced relapse prevention. During 6-month follow-up, 43% of control and 24% of intervention participants were hospitalized (χ2 = 11.76, p<0.001). Days of hospitalization were reduced by 5 days (mean days: b = −4.58, 95% CI −9.03 to −0.13, p = 0.044) in the intervention condition compared to control. Conclusions These results suggest that technology-enhanced relapse prevention is an effective and feasible way to reduce rehospitalization days among patients with schizophrenia.
Article
Among individuals with mental illness, transition-age youth (TAY; age 16–25) have the lowest rate of treatment-seeking and the highest rate of premature exiting from treatment, at the exact time when their needs for mental health supports are greatest. This qualitative study provides insight into the perspectives of adult and child service clinicians regarding their perceived barriers and facilitators to reducing disengagement during the transition from child to adult mental health care. While child and adult clinicians agreed on many key barriers, they often disagreed on influencing factors. Child and adult clinicians had greater agreement among facilitators, particularly the need to provide greater service array flexibility during this transition.
Article
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Aim: No previous study has investigated interventions for homeless youth suffering from first episode psychosis and comorbid substance use disorder (HYPS). An intensive assertive community intervention team (IACIT) offering outreach interventions, housing support as well as integrated care for early psychosis and substance use disorder (SUD) was created in 2012 at the Centre Hospitalier de l'Université de Montréal (CHUM). To explore the impact of the addition of an IACIT to an early intervention for psychosis service (EIS) on housing stability, functional and symptomatic outcomes and mental health service use. Methods: A two-year longitudinal study comparing the outcome of HYPS receiving combined EIS and IACIT since 2012, to a historical cohort of HYPS receiving EIS only between 2005 and 2011. Socio-demographic data, housing stability, functioning, illness severity, SUD severity, emergency room visits and hospitalizations were assessed at admission, at 1 month, and every 3 months thereafter. Results: HYPS receiving EIS + IACIT achieved housing stability more rapidly and spent less time hospitalized than HYPS getting EIS only (RR 2.38, P = .017). HYPS with cocaine misuse were less likely to attain housing stability (RR 0.25, P = .04). No between-group differences were found for psychiatric symptoms, functioning and SUD outcomes. Conclusion: The addition of IACIT-HYPS to EIS was associated with earlier housing stability and reduced total hospitalization days compared to EIS alone.
Article
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Coordinated specialty care (CSC) is a promising multielement treatment for the care of individuals experiencing the onset of schizophrenia. The community mental health block grant program has increased federal support for CSC programs. In order to maximize the number of sites capable of science-to-service or service-to-science translation, the National Institute of Mental Health funded a supplement to the PhenX toolkit consisting of measures for early psychosis. The early psychosis working group included translational research and clinical services panels. The clinical services panel was charged with identifying low-burden and psychometrically sound measures for use in routine clinical settings. The 19 new clinical measures complement existing measures already in the toolkit. Measures cover a range of domains, including symptoms, social and occupational functioning, well-being, medication adherence and side effects, physical activity, and shared decision making and person-centered care. Several challenges are also discussed. The review process underscored the challenges facing nonacademic sites in collecting even low-burden assessments.
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Background A core component of treatment provided by early intervention for psychosis (EI) services is ensuring individuals remain successfully engaged with the service. This ensures they can receive the care they may need at this critical early stage of illness. Unfortunately, rates of disengagement are high in individuals with a first episode of psychosis (FEP), representing a major barrier to effective treatment. This study aimed to ascertain the rates and determinants of disengagement and subsequent re-engagement of young people with FEP in a well-established EI service in Melbourne, Australia. Method This cohort study involved all young people, aged 15–24, who presented to the Early Psychosis Prevention and Intervention Centre (EPPIC) service with FEP between 1st January 2011 and 1st September 2014. Data were collected retrospectively from clinical files and electronic records. Cox regression analysis was used to identify determinants of disengagement and re-engagement. Results A total of 707 young people presented with FEP during the study period, of which complete data were available for 700. Over half of the cohort (56.3%, N = 394) disengaged at least once during their treatment period, however, the majority of these individuals (85.5%, N = 337) subsequently re-engaged following the initial episode of disengagement. Of those who disengaged from the service, 54 never re-engaged, representing 7.6% of the total cohort. Not being in employment, education or training, not having a family history of psychosis in second degree relatives and using cannabis were found to be significant predictors of disengagement. No significant predictors of re-engagement were identified. Conclusion In this study, the rate of disengagement in young people with first-episode psychosis was higher than found previously. Encouragingly, rates of re-engagement were also high. The concept of disengagement from services might be more complex than previously thought with individuals disengaging and re-engaging a number of times during their episode of care. What prompts individuals to re-engage with services needs to be better understood.
Book
This handbook is the definitive resource for understanding current mental health policy controversies, options, and implementation strategies. It offers a thorough review of major issues in mental health policy to inform the policy-making process, presenting the pros and cons of controversial, significant issues through close analyses of data. Some of the topics covered are the effectiveness of various biomedical and psychosocial interventions, the role of mental illness in violence, and the effectiveness of coercive strategies. The handbook presents cases for conditions in which specialized mental health services are needed and those in which it might be better to deliver mental health treatment in mainstream health and social services settings. It also examines the balance between federal, state, and local authority, and the financing models for delivery of efficient and effective mental health services. It is aimed for an audience of policy-makers, researchers, and informed citizens that can contribute to future policy deliberations.
Article
Background A core component of treatment provided by early intervention for psychosis (EI) services is ensuring individuals remain successfully engaged with the service. This ensures they can receive the care they may need at this critical early stage of illness. Unfortunately, rates of disengagement are high in individuals with a first episode of psychosis (FEP), representing a major barrier to effective treatment. This study aimed to ascertain the rates and determinants of disengagement and subsequent re-engagement of young people with FEP in a well-established EI service in Melbourne, Australia. Method This cohort study involved all young people, aged 15–24, who presented to the Early Psychosis Prevention and Intervention Centre (EPPIC) service with FEP between 1st January 2011 and 1st September 2014. Data were collected retrospectively from clinical files and electronic records. Cox regression analysis was used to identify determinants of disengagement and re-engagement. Results A total of 707 young people presented with FEP during the study period, of which complete data were available for 700. Over half of the cohort (56.3%, N = 394) disengaged at least once during their treatment period, however, the majority of these individuals (85.5%, N = 337) subsequently re-engaged following the initial episode of disengagement. Of those who disengaged from the service, 54 never re-engaged, representing 7.6% of the total cohort. Not being in employment, education or training, not having a family history of psychosis in second degree relatives and using cannabis were found to be significant predictors of disengagement. No significant predictors of re-engagement were identified. Conclusion In this study, the rate of disengagement in young people with first-episode psychosis was higher than found previously. Encouragingly, rates of re-engagement were also high. The concept of disengagement from services might be more complex than previously thought with individuals disengaging and re-engaging a number of times during their episode of care. What prompts individuals to re-engage with services needs to be better understood.
Article
Aim Early intervention for psychosis services (EIS) has been established worldwide and is offered to individuals experiencing a first episode of psychosis. Engagement with EIS typically lasts for 3 years, after which point, service users are either transferred to primary care or community mental health teams, according to perceived needs. Although UK National Institute for Clinical Excellence (NICE) guidelines recommend transfer of care should be arranged in conjunction with the receiving service, there exists little, if any, practical guidance as to how this should actually be managed. This study aims to investigate the barriers and facilitators of transition from EIS to both primary and secondary care services in the United Kingdom from the perspectives of service users. Methods Fifteen EIS service users who had either been discharged to primary or secondary services were interviewed about their experience of discharge. Data were analysed using interpretive thematic analysis, adopting a critical realist stance. Results Four themes were identified: feeling ready for discharge; relationships and trust; planning for discharge; life after EIS. Conclusions This is the first in‐depth exploration of a sample of largely male service users' views on transition from EIS to primary and/or secondary care services. We highlight several practical steps that EIS and receiving services can take to facilitate a more optimal discharge and transition experience for EIS service users. Taking into account service pressures, the discharge process should be one that is gradual, allowing time for the service user to both process the news and gradually sever ties with keyworkers.
Article
Aim Transition from early intervention in psychosis services (EIPS) to ongoing care can be challenging for staff and service users. This study aims to explore staff views of the barriers and facilitators to transition from EIPS. Methods Eighteen EIPS staff were interviewed about their experiences of discharge processes and interviews were analysed thematically. Results Four themes were identified: (1) “nowhere to go”: illustrated how service users remained in EIPS because other teams lacked capacity to take them; (2) “collaboration between agencies” highlights the challenges of working across boundaries; (3) “therapeutic relationships”: reflects the loss service users and staff experienced at discharge; (4) “advanced planning” relates to the necessity for advanced planning and service user empowerment to facilitate the discharge process. Conclusions This is the first in‐depth exploration of EIPS staff views on discharge processes. To ensure seamless transitions throughout care pathways, services need better inter‐agency collaboration and more adequate preparation for transition.
Article
Aim The purpose of this paper is to review fidelity and outcome measures which can be used to support broad implementation of first episode psychosis services and ensure quality of existing services. First episode psychosis services use a combination of evidence‐based practices to improve the outcome of a first episode of psychosis and the early stages of schizophrenia. Now that there is an established international evidence base to show that they are effective, efforts are being made to make such services widely available as a routine part of health care. Methods We provide an overview of the literature from the perspective of an expert task force that was commissioned to report to the board of the International Early Psychosis Association IEPA. First, we examined the evidence‐based components that underpin first episode psychosis services and identified common elements. Next, we reviewed the availability of fidelity measures and outcome indicators, finally we reviewed how broadly these services are delivered internationally, and the barriers to ensuring broad access to quality services. Results There is a growing consensus about the elements required to deliver effective services. Fidelity scales and performance measures are available to assess quality, access, and outcome. First episode psychosis services are variably offered in high‐income countries and rarely with attention to access and quality of services. Several strategies to promote implementation are identified. Conclusions Fidelity scales and outcome measure are valuable resources to support widespread implementation and quality assurance for first episode psychosis services.
Article
Objective: This study prospectively evaluated outcomes of OnTrackNY, a statewide coordinated specialty care (CSC) program for treatment of early psychosis in community settings, as well as predictors of outcomes. Methods: The sample included 325 individuals ages 16-30 with recent-onset nonaffective psychosis who were enrolled in OnTrackNY and who had at least one three-month follow-up. Clinicians provided data at baseline and quarterly up to one year. Domains assessed included demographic and clinical characteristics, social and occupational functioning, medications, suicidality and violence, hospitalization, and time to intervention. Primary outcomes included the symptoms, occupational functioning, and social functioning scales of the Global Assessment of Functioning (GAF), as adapted by the U.S. Department of Veterans Affairs Mental Illness Research, Education and Clinical Center; education and employment status; and psychiatric hospitalization rate. Results: Education and employment rates increased from 40% to 80% by six months, hospitalization rates decreased from 70% to 10% by three months, and improvement in GAF scores continued for 12 months. Female gender, non-Hispanic white race-ethnicity, and more education at baseline predicted better education and employment status at follow-up. Conclusions: Individuals with early psychosis receiving CSC achieved significant improvements in education and employment and experienced a decrease in hospitalization rate. Demographic variables and baseline education predicted education and employment outcomes. CSC teams should make particular effort to support the occupational goals of individuals at increased risk of not engaging in work or school, including male participants and participants from racial and ethnic minority groups.
Article
Importance The value of early intervention in psychosis and allocation of public resources has long been debated because outcomes in people with schizophrenia spectrum disorders have remained suboptimal. Objective To compare early intervention services (EIS) with treatment as usual (TAU) for early-phase psychosis. Data Sources Systematic literature search of PubMed, PsycINFO, EMBASE, and ClinicalTrials.gov without language restrictions through June 6, 2017. Study Selection Randomized trials comparing EIS vs TAU in first-episode psychosis or early-phase schizophrenia spectrum disorders. Data Extraction and Synthesis This systematic review was conducted according to PRISMA guidelines. Three independent investigators extracted data for a random-effects meta-analysis and prespecified subgroup and meta-regression analyses. Main Outcomes and Measures The coprimary outcomes were all-cause treatment discontinuation and at least 1 psychiatric hospitalization during the treatment period. Results Across 10 randomized clinical trials (mean [SD] trial duration, 16.2 [7.4] months; range, 9-24 months) among 2176 patients (mean [SD] age, 27.5 [4.6] years; 1355 [62.3%] male), EIS was associated with better outcomes than TAU at the end of treatment for all 13 meta-analyzable outcomes. These outcomes included the following: all-cause treatment discontinuation (risk ratio [RR], 0.70; 95% CI, 0.61-0.80; P < .001), at least 1 psychiatric hospitalization (RR, 0.74; 95% CI, 0.61-0.90; P = .003), involvement in school or work (RR, 1.13; 95% CI, 1.03-1.24; P = .01), total symptom severity (standardized mean difference [SMD], −0.32; 95% CI, −0.47 to −0.17; P < .001), positive symptom severity (SMD, −0.22; 95% CI, −0.32 to −0.11; P < .001), and negative symptom severity (SMD, −0.28; 95% CI, −0.42 to −0.14; P < .001). Superiority of EIS regarding all outcomes was evident at 6, 9 to 12, and 18 to 24 months of treatment (except for general symptom severity and depressive symptom severity at 18-24 months). Conclusions and Relevance In early-phase psychosis, EIS are superior to TAU across all meta-analyzable outcomes. These results support the need for funding and use of EIS in patients with early-phase psychosis.