Coordinated Specialty Care Discharge, Transition, and Step-Down Policies, Practices, and Concerns: Staff and Client Perspectives
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.
HIGHLIGHTS
•
Current policies and practices regarding discharge and transition from coordinated specialty care (CSC) programs 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 strategies are critical priorities for the field.
First-episode psychosis (FEP) is a serious mental health condition with historically poor long-term outcomes, particularly 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 (5–9). However, both premature disengagement (10) and longer-term postdischarge erosion of the advantages of EIP/CSC participation relative to status quo services remain significant concerns (8, 11–14). In particular, concerns about postdischarge outcomes and uncertainty regarding optimal length of EIP/CSC services have prompted a series of recent “extension” trials (15–17) as well as international dialogue about the long-term impact of variables such as duration of untreated psychosis and the quality and intensity of EIP/CSC program components focused on functional and vocational recovery in addition to symptom remission (18–21).
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 clinicians’ and clients’ perspectives. 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 clients’ transition 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 subjective 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 national 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 clinicians 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 implementation 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 supplement to this article.
Study sites.
The study includes 36 sites implementing services with varying levels of fidelity to the CSC model, selected 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, specific program model (OnTrack, EASA, NAVIGATE, etc.), and urbanicity.
Recruitment and interview procedures.
Data presented here were collected during two visits to each site, conducted between 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 researchers, including several authors (TD, PG, AR, and DS).
Interview protocols were developed by the MHBG evaluation team, incorporating feedback and suggestions from governmental sponsors, expert advisors, and partners. Questions covered a range of areas related to CSC program implementation, including explicit questions regarding transition practices—namely, 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, and if 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 program 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 program, they were also asked how they felt about the idea of moving on (e.g., whether they felt ready) and whether anyone was helping them connect with services.
Sample characteristics.
For providers, individual demographic 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 participated in each interview, with participants potentially including care managers or case 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 Caucasian (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 mean±SD age of client respondents was 22.5±4.46 (range 14–33). The length of time enrolled in the CSC program 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 psychosis–specific step-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 transition was captured, systematic key term searches were also conducted—i.e., searches for key terms such as step-down, transition, graduation, discharge, and other related words—and the surrounding narrative was reviewed in order to verify that no relevant text was missed. Extracted sections were then coded by using systematic content analysis (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 interview protocol questions and the team’s 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 participant transcripts (until code saturation was reached). In some cases, uncertainties in the interviews prompted additional triangulation work. For example, ambiguous responses to questions regarding state or regional discharge or length-of-service policy prompted the research team to review 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 finalization 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 consisting of missed codes rather than disagreement about correct application of existing codes. The qualitative software program 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 reporting intended to characterize the nature and range of participant perspectives. Wherever thematic frequencies are provided, a denominator is included, with the denominator varying relative to the number of interviews in which material relevant to the code in question was present. For client interviews, frequency reporting includes both overall frequencies 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 implications 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 0–12 months, enrolled for 13–23 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 flexibility to extend services, was the modal response. Variations in flexibility were considerable, with some programs able to extend services for a few weeks or months, whereas others were able to extend in fixed 6-month increments. Several sites noted greater flexibility when the program was below census. Three of the 36 programs were described as abandoning an initially rigid 2-year limit and adding flexibility in response to clients’ extended service needs (“It's not 24 months anymore. It was. We were limited at first. But now since the research is starting to show that people are benefiting from 3 to 5 years of service, we're 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.
| Programs | |||
|---|---|---|---|
| Program length | Description and context | N | % |
| 2-year target with flexibility 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 | Providers’ ability to extend services is very proscribed | 4 | 11 |
| Expectation that clients will average 2 years in the program; no fixed limit | General expectation is that most clients will require 2 years, but this is not framed as a “target” or “goal,” and there is no upper limit on services | 3 | 8 |
| Maximum 3-year service period | Program staff described the program as of 3 years in duration, or they identified 3 years as the upper limit | 4 | 11 |
| Program serves clients beyond 3 years | Program staff reported an expectation that services may last more than 3 years, without specifying an exact target | 2 | 6 |
| 5-year service period | Regional guidance clearly specifies that services should be provided for up to 5 years | 4 | 11 |
| Indefinite 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 | 3 | 8 |
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 cohorts. 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 clients—seeing clients at agencywide events, for example, or at CSC program–hosted reunions—these interactions provided, at best, a very partial window into postdischarge trajectories.
Discharge and transition strategies.
Although staff at only two programs described early psychosis–specific postdischarge 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 client’s 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. . . . It just wouldn’t 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 therapists or psychiatrists, staff at one program described the ability and capacity to provide indefinite supported education 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 needs or the availability of appropriate within-agency services; 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 specific structured or semistructured tools or checklists, completed with clients prior to discharge. Some of these procedures included 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 programs, ensuring client satisfaction with new services prior to finalizing their discharge. Third, a number of teams described 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 increasing 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 management or taper off certain program components completely. 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 services—for example, services designed to support both Medicaid and privately insured 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 medication management after discharge, whereas others would require therapeutically intensive residential or day programs. In addition, many clinicians emphasized variations in available family support and social capital as having an impact on discharge planning and client prognosis. Heterogeneous 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 experience debilitating symptoms or functional limitations that required intensive ongoing care.
Clinician discharge experiences and concerns.
Most program staff expressed at least some concerns regarding postdischarge services and client trajectories. These concerns were place specific 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 clients’ well-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? What's happening?” and almost nobody had continued in outpatient care. It's 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 couldn't get the appointments. So, the desire to get care was there, but they were dissatisfied with what they were able to get.
Table 2 summarizes other specific areas of concern, often based on cases in which the program had been alerted to postdischarge outcomes for selected clients.
| 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 they’re sort of like a holding place.” |
| Disengagement or discontinuation of treatment or medication after discharge | 5 | 14 | “Someone could be in this program functioning beautifully . . . but then once they leave . . . they lose it. Suddenly they think they don’t need meds anymore . . . and no one’s there to catch them. . . . We’ve had a lot of really heartbreaking cases like that.” |
| Difficulty of transition to status quo services after initial experience of high-quality CSC | 4 | 11 | “The quality of treatment in [our city], and I would imagine in a lot of these large urban areas, is just not good. And so, it's not good by itself, and then it's really not good when you've had such an amazing program like this wrapped around you for so long. You know you're going somewhere that's 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 | 4 | 11 | “For a 19-year-old having to pay that much money on medication, that's 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 | 3 | 8 | “And a lot of people are on clozapine . . . or at the injection clinic. So, if that'll have to change in addition to who they were seeing, it would just be a lot much more complex to coordinate and to find places that have those similar services.” |
| Access to psychiatrists able or willing to prescribe antipsychotics | 2 | 22 | “It's a super big challenge getting a primary care or a private psychiatrist to continue medication. Those types of medications are really just specific to community mental health centers, primarily. That's where the bulk of those types of physicians are. To get someone with Medicaid connected to a private psychiatrist in a community that's going to provide an antipsychotic is pretty unlikely. There's a very low availability of those kinds of doctors. That's where our clients get stuck.” |
Although concerns of various kinds were common, with many teams expressing an overall preference for a service period significantly longer than 2 years, others emphasized the importance of keeping CSC programs transitional in order to prevent potentially harmful “engulfment” in a patient role. Three sites reduced their service length for this reason. Other staff, speaking in this vein, emphasized differences between ongoing long-term medication management (which might be desirable or necessary in the long-term) versus therapy. For example, one staff member noted, “I don't think therapy should be lifelong. It should be one of your goals, but to set you in that direction. With this program, [CSC], let's make sure you're 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 awareness, 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 specific codes were discussed, with a further breakdown by length of time spent in CSC services at the time of the index interview.
| Theme and code | Example quotation |
|---|---|
| Client-provider discharge planning | |
| Discussion of discharge plan | |
| Plan discussed | “What's 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, we're addressing the outcomes and future now, which is good instead of just saying, ‘Oh, 2 years is done. You're on your own.’ It's not beating around the bush or anything.” |
| Plan not discussed | Interviewer: “And have you talked at all about not being in the program, because you're going away to school?” Client: “We haven't talked about what's 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 didn’t 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. I'm not really sure how that works.” |
| Aware of specific service limit | “It’s a 2-year program.” |
| Aware and believes there is not a limit | “No. There's not [a time limit]. I think as long as it's helpful. I mean, it's not like my diagnosis is going away anytime soon. So, I'll probably be in the program for the foreseeable future.” |
| Perceived readiness for discharge | |
| Ready for discharge | |
| Feels confident, prepared, ready | “Honestly, I feel like this was a very good foundation. So, I feel like now that I've been really educated in many ways, that I feel like I can do it on my own.” |
| Not ready for discharge | |
| Doesn’t feel ready, does not want to be discharged | “Yeah, I'm actually being told that I'm done with the program. I've completed the program and that a different program is going to have to take over. So, I'm a little stressed out about that. How can I have completed and I'm not fully recovered? . . . I haven't been assisted with that [other services beyond the program]. I've only been asked questions.” |
| Concerns and feelings about discharge | |
| Positive feelings | |
| Fine, okay, content, good | “It's just like I'll be done with it, but I won't be scared because I'll be facing it still with my family. I'll have family and loved ones. And I'll be better at handling situations that stress me because of [the program].” |
| Happy, excited, proud, hopeful | “I think I'd 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 I'd be slightly relieved to know that maybe this is a new chapter of my life that's starting now.” |
| Grateful to program | “My doctor told me that I'm going to graduate from the program in about another 3 to 4 months and I’ll be happy that I'm graduating, but a little bit sad because . . . it's a transition. It is. But I'm very grateful [to the program], and I can't express it enough.” |
| Negative feelings | |
| Sad, distressed, anxious | “[I feel] very, very bad. I feel very bad because I'm not going to have the people and I'm 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 couldn't come here, I think I'd lost a place I couldn't 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 | “It'd be a little sad, 'cause I feel like this is my new community. But all things go, and all things change, so it'll be like finding a new shell.” |
| Uneasy or unsure; may or may not turn out well | “Sometimes I do feel like I'm ready to move on, but then I don't feel like I'm ready to move on.” |
| Vague feelings | |
| Unsure how he or she feels | Interviewer: “What do you think it'll be like when you're not in the program anymore?” Client: “I don't know. I honestly don't know.” |
| Specific areas of concern | |
| Postdischarge service availability in client’s native language | “I'm going to miss it because of the help I've received here. And, I don't know how it's 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 don't just look at them as work, I look at them like somebody I can depend on or something. Even though I'm trying to be independent, like I can depend on them or something.” |
| Loss of structure | “Right now, I'd rather not have to [discharge]. I'd like to continue the program. I'm 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, I'm somebody that would vote to stay indefinitely if need be.” |
| Inability to handle future stressors without the program | “Just because, like, I don't think I'll ever be off my medication, because when the episodes happen, I can't tell if it's real or not. And I come from a very religious family, and so when stuff happens if I didn't have this program, I don't know what I would do.” |
| Months in program | |||||||
|---|---|---|---|---|---|---|---|
| Theme or code mentionedb | |||||||
| Domain, theme, and code | Domain mentioneda | N | % | 0–12 | 13–23 | ≥24 | Discharged or at 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 didn’t 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 specific 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 confident, prepared, ready | 14 | 45 | 3 | 3 | 6 | 2 | |
| Not ready for discharge | |||||||
| Doesn’t 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 | 7 | 47 | 2 | 2 | 1 | 2 | |
| Ambivalent feelings | 15 | 32 | 3 | 4 | 6 | 2 | |
| Sad or will miss it, but also sees moving on as a positive step | 9 | 60 | 3 | 2 | 3 | 1 | |
| Uneasy or unsure; may or may not turn out well | 6 | 40 | 0 | 2 | 3 | 1 | |
| Vague feelings; unsure how he or she feels | 8 | 17 | 6 | 1 | 0 | 1 | |
| Specific areas of concern | 20 | 43 | 8 | 5 | 4 | 3 | |
| Postdischarge service availability in client’s native language | 2 | 10 | 2 | 0 | 0 | 0 | |
| 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 | 6 | 30 | 2 | 1 | 2 | 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.
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 discomfort—for example, feeling unprepared or distressed—and concerns about the implications of losing valued supports and structure. One participant, for example, compared current CSC staffing to projected future services: “Any doctors [in standard treatment] . . . they're more, I don't 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 clients’ discomfort, attachment to particular clinicians—and the distressing prospect of losing these relationships—were frequently mentioned: “I told them that I didn't like the fact that I wasn't going to be able to reach out to them anymore after the program. . . . I didn't like the fact that after my time here, like after the 2-year mark, I can't reach out to [team members] because of confidentiality reasons. . . . I don’t 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 discharge 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 example, noted instances in which clients might feel prepared for discharge but in fact were not or, conversely, feel unprepared when, from the providers’ point 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 fine, and now I'm seeing them in the home and they are not fine. . . . They're saying, ‘Everything's great, I'm great, I'm doing wonderful. I just started a business.’ And then their parents are like, ‘Yeah, they made that business up. It's not a real thing’”
Discussion
Main Findings
These findings 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 significant 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 refinement of CSC and post-CSC services.
Clinical Implications and Future Directions
The overarching goals of early detection and early intervention include a fundamental redirection of the historically poor prognosis of individuals with early psychotic disorders (35–37) and the transformation of initial systems of care (38). Follow-up research (8, 10–14) and associated step-down and extension trials (15–17) 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 (39–42)—in some cases providing genuinely substantive advice (39)—empirical substantiation of best practices remains scarce (43). Our findings underscore the absence of a unified national strategy for CSC transition in the United States and, presumably, other countries with distributed CSC services. Our findings also highlight the role of transition and postdischarge services and the importance of incorporating explicit 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 [22–24]) should guide clinical policy, including the development or refinement of fidelity tools. Ideally, in this context, practice-oriented research initiatives would also make an explicit commitment to unpacking the implications of national, regional, and client-level heterogeneity and how best to craft and finance models that preserve the initial benefits of CSC programs while also titrating supports to foster independence. Key considerations include local non-CSC service availability and financing 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 programs are able to articulate well-developed policies and practices (in interviews), program clients may remain confused or unclear about what to expect. Future research and program development efforts would thus ideally include a strong focus on understanding clients’ subjective 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 perspectives—especially insofar as they may affect program-level decisions to extend care or move forward with discharge—also 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 programs—within a standard 2- to 3-year treatment window—could 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 approaches in the published literature include ramped-up supported education and employment services (18, 44) and CSC modifications designed to improve outcomes for high-risk subgroups, including youths and young adults experiencing or at risk of homelessness (45) and those identified early in CSC as likely to disengage from services (46). Conversely, 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 interviews, 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 tensions 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 (47–49), albeit with contemporary insurance policies strongly favoring (if not requiring) time-limited therapeutic interventions (50). Pronounced differences between clients in the level of ongoing disability or distress—and the time needed to lay the foundation for recovery—further 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 individual’s wants and needs for an unlimited period rather than transitioning the client to alternative services. This would require staffing 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 (53–55) and oriented toward the investigation of mechanisms whereby interventions can facilitate long-term healing as well as short-term effectiveness (56–59).
Limitations
Major strengths of the analyses presented here include the number of programs and states included in the evaluation sample, and the projects’ large multistakeholder sample. Nevertheless, questions and discussion about discharge and transition constituted a relatively small piece of a comprehensive and multifaceted evaluation. In any given interview, transition-specific discussion may have spanned as little as 5–10 minutes, falling short of the depth of coverage that would have been enabled by a research project more exclusively focused on the topic of discharge and transition. Furthermore, depth of discussion varied considerably across interviews, and a significant 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 sampling strategies to capture the range of experiences likely present even among current or former clients within the same program and would also ensure adequate representation of participants with varying levels of disability, premorbid 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 initial treatment advantages of early intervention services are widespread. As our research documents, U.S. clinicians, both academic and community-based, share these concerns, as—in more indirect ways—do many CSC clients. Although programs have developed a range of strategies for supporting 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.
Supplementary Material
File (appi.ps.201900514.ds001.pdf)
- View/Download
- 380.00 KB
References
1.
Morgan C, Lappin J, Heslin M, et al: Reappraising the long-term course and outcome of psychotic disorders: the AESOP-10 study. Psychol Med 2014; 44:2713–2726
2.
Henry LP, Amminger GP, Harris MG, et al: The EPPIC follow-up study of first-episode psychosis: longer-term clinical and functional outcome 7 years after index admission. J Clin Psychiatry 2010; 71:716–728
3.
Azrin ST, Goldstein AB, Heinssen RK: Expansion of coordinated specialty care for first-episode psychosis in the US. Focal Point 2016; 30:9–11
4.
Bello I, Lee R, Malinovsky I, et al: OnTrackNY: the development of a coordinated specialty care program for individuals experiencing early psychosis. Psychiatr Serv 2017; 68:318–320
5.
Chen EY, Tang JY, Hui CL, et al: Three-year outcome of phase-specific early intervention for first-episode psychosis: a cohort study in Hong Kong. Early Interv Psychiatry 2011; 5:315–323
6.
Correll CU, Galling B, Pawar A, et al: Comparison of early intervention services vs treatment as usual for early-phase psychosis: a systematic review, meta-analysis, and meta-regression. JAMA Psychiatry 2018; 75:555–565
7.
Kane JM, Robinson DG, Schooler NR, et al: Comprehensive versus usual community care for first-episode psychosis: 2-year outcomes from the NIMH RAISE early treatment program. Am J Psychiatry 2016; 173:362–372
8.
Nordentoft M, Rasmussen JØ, Melau M, et al: How successful are first episode programs? A review of the evidence for specialized assertive early intervention. Curr Opin Psychiatry 2014; 27:167–172
9.
Nossel I, Wall MM, Scodes J, et al: Results of a coordinated specialty care program for early psychosis and predictors of outcomes. Psychiatr Serv 2018; 69:863–870
10.
Doyle R, Turner N, Fanning F, et al: First-episode psychosis and disengagement from treatment: a systematic review. Psychiatr Serv 2014; 65:603–611
11.
Bosanac P, Patton GC, Castle DJ: Early intervention in psychotic disorders: faith before facts? Psychol Med 2010; 40:353–358
12.
Chang WC, Kwong VWY, Lau ESK, et al: Sustainability of treatment effect of a 3-year early intervention programme for first-episode psychosis. Br J Psychiatry 2017; 211:37–44
13.
Gafoor R, Nitsch D, McCrone P, et al: Effect of early intervention on 5-year outcome in non-affective psychosis. Br J Psychiatry 2010; 196:372–376
14.
Secher RG, Hjorthøj CR, Austin SF, et al: Ten-year follow-up of the OPUS specialized early intervention trial for patients with a first episode of psychosis. Schizophr Bull 2015; 41:617–626
15.
Albert N, Melau M, Jensen H, et al: Five years of specialised early intervention versus two years of specialised early intervention followed by three years of standard treatment for patients with a first episode psychosis: randomised, superiority, parallel group trial in Denmark (OPUS II). BMJ 2017; 356:i6681
16.
Chang WC, Chan GH, Jim OT, et al: Optimal duration of an early intervention programme for first-episode psychosis: randomised controlled trial. Br J Psychiatry 2015; 206:492–500
17.
Malla A, Joober R, Iyer S, et al: Comparing three-year extension of early intervention service to regular care following two years of early intervention service in first-episode psychosis: a randomized single blind clinical trial. World Psychiatry 2017; 16:278–286
18.
Dudley R, Nicholson M, Stott P, et al: Improving vocational outcomes of service users in an early intervention in psychosis service. Early Interv Psychiatry 2014; 8:98–102
19.
Penttilä M, Jääskeläinen E, Hirvonen N, et al: Duration of untreated psychosis as predictor of long-term outcome in schizophrenia: systematic review and meta-analysis. Br J Psychiatry 2014; 205:88–94
20.
Friis S: Early specialised treatment for first-episode psychosis: does it make a difference? Br J Psychiatry 2010; 196:339–340
21.
Singh SP: Early intervention in psychosis. Br J Psychiatry 2010; 196:343–345
22.
Lester H, Khan N, Jones P, et al: Service users’ views of moving on from early intervention services for psychosis: a longitudinal qualitative study in primary care. Br J Gen Pract 2012; 62:e183–e190
23.
Loughlin M, Berry K, Brooks J, et al: Moving on from early intervention for psychosis services: service user perspectives on the facilitators and barriers of transition. Early Interv Psychiatry 2019; 13:1396–1403
24.
Woodward S, Bucci S, Edge D, et al: Barriers and facilitators to “moving on” from early intervention in psychosis services. Early Interv Psychiatry 2019; 13:914–921
25.
Goldman HH, Frank RG, Morrissey JP: The Palgrave Handbook of American Mental Health Policy. New York, Palgrave Macmillan, 2019
26.
Andersen RM, Rice TH, Kominski GF: Changing the US Health Care System: Key Issues in Health Services Policy and Management. New York, Wiley, 2011
27.
Rosenheck RA: The integration-fragmentation paradox. Psychiatr Serv 2006; 57:909–910
28.
Dixon LB, Goldman HH, Srihari VH, et al: Transforming the treatment of schizophrenia in the United States: the RAISE initiative. Annu Rev Clin Psychol 2018; 14:237–258
29.
Rosenblatt A, Goldman HH: Early intervention and policy; in Intervening Early in Psychosis: A Team Approach. Edited by Hardy KV, Ballon JS, Noordsy DL, et al. Washington, DC, American Psychiatric Publishing, 2019
30.
Franzosi RP: Content analysis: objective, systematic, and quantitative description of content; in Handbook of Data Analysis. Edited by Hardy M, Bryman A. Thousand Oaks, CA, Sage, 2008
31.
Stemler S: An overview of content analysis. Pract Assess, Res Eval 2001; 7:137–146
32.
ATLAS.ti, 8.4. Berlin, ATLAS.ti Scientific Software, 2019
33.
Stata, 15. College Station, TX, Stata Corp, 2018
34.
SPSS for Windows, 19.0. Chicago, SPSS Inc, 2018
35.
Birchwood M, Todd P, Jackson C: Early intervention in psychosis: the critical period hypothesis. Br J Psychiatry Suppl 1998; 172:53–59
36.
McGorry PD: “A stitch in time” . . . the scope for preventive strategies in early psychosis. Eur Arch Psychiatry Clin Neurosci 1998; 248:22–31
37.
McGorry PD, Hickie IB, Yung AR, et al: Clinical staging of psychiatric disorders: a heuristic framework for choosing earlier, safer and more effective interventions. Aust N Z J Psychiatry 2006; 40:616–622
38.
Malla AK, Norman RM: Early intervention in schizophrenia and related disorders: advantages and pitfalls. Curr Opin Psychiatry 2002; 15:17–23
39.
Managing Transitions in Care for Young People With Early Psychosis. Melbourne, Orygen National Centre for Excellence, 2015
40.
Essock SM, Nossel IR, McNamara K, et al: Practical monitoring of treatment fidelity: examples from a team-based intervention for people with early psychosis. Psychiatr Serv 2015; 66:674–676
41.
Petrakis M, Hamilton B, Penno S, et al: Fidelity to clinical guidelines using a care pathway in the treatment of first episode psychosis. J Eval Clin Pract 2011; 17:722–728
42.
Addington D, Birchwood M, Jones P, et al: Fidelity scales and performance measures to support implementation and quality assurance for first episode psychosis services. Early Interv Psychiatry 2018; 12:1235–1242
43.
Dixon L, Jones N, Loewy R, et al: Recommendations and challenges of the clinical services panel of the PhenX Early Psychosis Working Group. Psychiatr Serv 2019; 70:514–517
44.
Bond GR, Drake RE, Luciano A: Employment and educational outcomes in early intervention programmes for early psychosis: a systematic review. Epidemiol Psychiatr Sci 2015; 24:446–457
45.
Doré-Gauthier V, Miron JP, Jutras-Aswad D, et al: Specialized assertive community treatment intervention for homeless youth with first episode psychosis and substance use disorder: a 2-year follow-up study. Early Interv Psychiatry (Epub ahead of print, July 5, 2019)
46.
Alameda L, Golay P, Baumann P, et al: Assertive outreach for “difficult to engage” patients: a useful tool for a subgroup of patients in specialized early psychosis intervention programs. Psychiatry Res 2016; 239:212–219
47.
Herman DB, Mandiberg JM: Critical time intervention: model description and implications for the significance of timing in social work interventions. Res Soc Work Pract 2010; 20:502–508
48.
Leichsenring F, Rabung S: Long-term psychodynamic psychotherapy in complex mental disorders: update of a meta-analysis. Br J Psychiatry 2011; 199:15–22
49.
Muench GA: An investigation of the efficacy of time-limited psychotherapy. J Couns Psychol 1965; 12:294–299
50.
Karon BP: Provision of psychotherapy under managed health care: a growing crisis and national nightmare. Prof Psychol Res Pr 1995; 26:5–11
51.
Tsemberis S, Gulcur L, Nakae M: Housing First, consumer choice, and harm reduction for homeless individuals with a dual diagnosis. Am J Public Health 2004; 94:651–656
52.
Tsemberis S: Housing First: the pathways model to end homelessness for people with mental illness and addiction manual. Eur J Homelessness 2011; 5:235–240
53.
Callard F, Rose D: The mental health strategy for Europe: why service user leadership in research is indispensable. J Ment Health 2012; 21:219–226
54.
Callard F, Rose D, Wykes T: Close to the bench as well as at the bedside: involving service users in all phases of translational research. Health Expect 2012; 15:389–400
55.
Jones N, Harrison J, Aguiar R, et al: Transforming research for transformative change in mental health: towards the future; in Community Psychology and Community Mental Health: Towards Transformative Change. Edited by Nelson G, Kloos B, Ornelas J. Oxford, UK, Oxford University Press, 2014
56.
Beresford P: From “other” to involved: user involvement in research: an emerging paradigm. Nord Soc Work Res 2013; 3:139–148
57.
Gruen RL, Elliott JH, Nolan ML, et al: Sustainability science: an integrated approach for health-programme planning. Lancet 2008; 372:1579–1589
58.
Ory MG, Lee Smith M, Mier N, et al: The science of sustaining health behavior change: the health maintenance consortium. Am J Health Behav 2010; 34:647–659
59.
Wiltsey Stirman S, Kimberly J, Cook N, et al: The sustainability of new programs and innovations: a review of the empirical literature and recommendations for future research. Implement Sci 2012; 7:17–22
60.
Dixon L, Lyles A, Scott J, et al: Services to families of adults with schizophrenia: from treatment recommendations to dissemination. Psychiatr Serv 1999; 50:233–238
61.
Drapalski A, Leith J, Dixon L: Involving families in the care of persons with schizophrenia and other serious mental illnesses: history, evidence, and recommendations. Clin Schizophr Relat Psychoses 2009; 3:39–49
62.
Kim DJ, Brown E, Reynolds S, et al: The rates and determinants of disengagement and subsequent re-engagement in young people with first-episode psychosis. Soc Psychiatry Psychiatr Epidemiol 2019; 54:945–953
63.
Lal S, Malla A: Service engagement in first-episode psychosis: current issues and future directions. Can J Psychiatry 2015; 60:341–345
Information & Authors
Information
Published In
History
Received: 16 October 2019
Revision received: 11 December 2019
Accepted: 16 January 2020
Published online: 19 March 2020
Published in print: May 01, 2020
Keywords
Authors
Author Contributions
The first two authors contributed equally to this article.
Competing Interests
Dr. Jones reports serving on an advisory board for Mindstrong Health. The other authors report no financial relationships with commercial interests.
Funding Information
Center for Mental Health Serviceshttp://dx.doi.org/10.13039/100005268: Task Order No. HHSS283201200011I/HHSS28342008T, Re
National Institute of Mental Healthhttp://dx.doi.org/10.13039/100000025: Task Order No. HHSS283201200011I/HHSS28342008T, Re
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, reference 283-12-1108).Metrics & Citations
Metrics
Citations
Export Citations
If you have the appropriate software installed, you can download article citation data to the citation manager of your choice. Simply select your manager software from the list below and click Download.
For more information or tips please see 'Downloading to a citation manager' in the Help menu.
View Options
View options
PDF/EPUB
View PDF/EPUBGet Access
Login options
Already a subscriber? Access your subscription through your login credentials or your institution for full access to this article.
Personal login Institutional Login Open Athens loginNot a subscriber?
PsychiatryOnline subscription options offer access to the DSM-5-TR® library, books, journals, CME, and patient resources. This all-in-one virtual library provides psychiatrists and mental health professionals with key resources for diagnosis, treatment, research, and professional development.
Need more help? PsychiatryOnline Customer Service may be reached by emailing [email protected] or by calling 800-368-5777 (in the U.S.) or 703-907-7322 (outside the U.S.).