First Episode Psychosis Treatment: What Coordinated Specialty Care Does

The National Institute of Mental Health states that coordinated specialty care is now the standard of care for treating early psychosis, according to the American Psychiatric Association's schizophrenia guideline.¹ In the NIMH RAISE Early Treatment Program trial (RAISE-ETP), 404 people at 34 clinics in 21 states were followed for at least 2 years. Those in coordinated care stayed in treatment longer (a median of 23 months compared with 17) and improved more on quality of life, with an effect size of 0.31.²

Hospitalization in that trial did not differ between groups: 34% and 37% over two years.² This practice refers people with a first episode of psychosis to coordinated specialty care programs.

What a coordinated specialty care program provides

NIMH describes a recovery-oriented team approach built on shared decision-making among specialists, the person experiencing psychosis, and family members. The components are:¹

• Individual or group psychotherapy
• Family support and education
• Medication management
• Supported employment and education
• Case management

How to find a first-episode psychosis program

The federal Early Serious Mental Illness Treatment Locator, run by SAMHSA, is a confidential and anonymous directory of programs in the United States and its territories for a recent onset of psychosis, schizophrenia, bipolar disorder, and other conditions.³

In New York, OnTrackNY operates 31 coordinated specialty care teams throughout the state.⁶ Its referral page lists three eligibility criteria:⁴

• Age 16 to 30
• Symptoms of non-affective psychosis, such as hallucinations, delusions, or unusual thoughts
• Psychosis symptoms for less than 2 years

Two teams, OnTrackNY Southern Tier in Binghamton and OnTrackNY CNY in Syracuse, may accept people with affective psychosis and people who have had symptoms for less than 5 years. If someone isn't eligible, the team will do its best to help route them to appropriate care.⁴ Teams provide services regardless of insurance status and ability to pay, although insurance and billing policies vary by team. Medication is not a requirement for enrollment, and participants graduate after roughly 2 years on average.⁵

What the RAISE-ETP trial found

RAISE-ETP randomized clinics to a coordinated specialty care program or to community care. The 223 program participants also had greater improvement in symptoms and more involvement in work and school than the 181 in community care.²

The median duration of untreated psychosis in the trial was 74 weeks. Among participants at or below that median, the effect size on quality of life was 0.54, and among those above it the effect size was 0.07.² The 74-week figure is the median of this sample, and the authors chose a median split to maximize statistical power; the trial didn't test it as a deadline for starting care.

At five years the finding had faded. Duration of untreated psychosis no longer moderated the quality-of-life difference (P = .32). Only 31% of participants had a five-year assessment. The primary analysis still favored the program by 13.14 units on the quality-of-life scale, the sensitivity analysis found no significant difference, and the authors called their conclusions limited by the low follow-up rate.⁷

What the pooled trials show

A 2018 meta-analysis pooled 10 randomized trials with 2,176 patients. Early intervention services had better results than usual treatment on all 13 outcomes at the end of treatment, including treatment discontinuation (risk ratio 0.70), at least one psychiatric hospitalization (risk ratio 0.74), and involvement in school or work (risk ratio 1.13).⁸ The hospitalization evidence is therefore mixed, with a benefit in the pooled trials and none in RAISE-ETP.

Most advantages were lost after the programs ended

The Danish OPUS trial compared 2 years of intensive early intervention with standard treatment. The program improved clinical outcome at 2 years, and the authors reported that the effects were not sustained 5 years later.⁹ At 10 years, most of the short-term effects had diminished or vanished.¹⁰ At 20 years, with 164 of 547 participants interviewed, the groups did not differ. Across both groups, 53 participants (40%) were in symptom remission and 23 (18%) were in clinical recovery.¹¹

A Hong Kong trial of 160 patients extended a 2-year program by a third year. After the specialized service ended, the groups no longer differed in functioning, symptom severity, or service use.¹² The NICE guideline says to consider extending early intervention services beyond 3 years if the person has not made a stable recovery.¹⁸

Program reports without a comparison group

Two reports from US programs are uncontrolled. The RAISE Connection Program enrolled 65 people at two sites, and its authors noted the lack of a built-in comparison group.¹⁴ A 2018 paper on 325 OnTrackNY enrollees reported that education and employment rates rose from 40% to 80% by six months and that hospitalization rates fell from 70% to 10% by three months.¹³ Without a control group, these figures can't show how much of the change the program produced.

Response and relapse after a first episode

In a meta-analysis of 17 studies with 3,156 participants, 81.3% of first-episode patients reached at least a 20% reduction in symptom scores on an antipsychotic, and 51.9% reached at least a 50% reduction.¹⁵

Among 104 patients who had responded to treatment of a first episode, the cumulative first relapse rate five years after recovery was 81.9%. Discontinuing antipsychotic medication was associated with an almost 5 times higher risk of relapse (hazard ratio 4.89).¹⁶ That study was published in 1999.

How long to stay on medication

The 2023 VA/DoD guideline supports continuing an antipsychotic that worked for a first episode. It also states that the reviewed studies did not show the optimal length of treatment, which "precludes a treatment recommendation" on duration.¹⁷ NICE advises telling patients that there is a high risk of relapse if they stop medication in the next 1 to 2 years.¹⁸ How long to continue is a decision made with the treating team, and I've written separately about what the trials of stopping antipsychotics show.

Limitations of the evidence

This evidence has limitations. First, the American Psychiatric Association's position is reported here through NIMH, and the guideline's own wording was not reviewed. Second, the long-term follow-up lost many participants, with 164 of 547 interviewed at 20 years in OPUS. Nevertheless, the randomized evidence supports starting care in a coordinated specialty program, and the follow-up data argue for planning what happens after the program ends.

In a crisis: call or text 988, or go to the nearest emergency department. A first episode of psychosis belongs in a hospital-based or coordinated specialty care program.

I start and manage clozapine in an outpatient practice in Chelsea, Manhattan. Details are on the schizophrenia care in NYC page. Clozapine should not be stopped, skipped, or restarted without the prescriber. This page is general information and does not replace an evaluation.

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