Understanding help seeking pathways to care in a first episode psychosis coordinated specialty clinic

Abstract

Introduction

Duration of untreated psychosis (DUP) is a common metric for evaluating early psychosis intervention, with shorter DUP linked to improved outcomes. A prior study with the Early Psychosis Intervention Clinic—New Orleans (EPIC-NOLA) found that patients who accessed care after their first help-seeking episode (“EPIC-First”) had shorter DUP and lower risk of future hospitalization than those with multiple episodes. However, focusing solely on DUP and hospitalization may obscure aversive experiences within the help-seeking journey.

Objective

To further characterize the EPIC-First subgroup and analyze patient-reported barriers to care through thematic analysis.

Methods

All participants who completed the pathways to care (PTC) assessment between November 2018 and July 2024 were included. The PTC captures both structured and narrative data on help-seeking episodes (HSEs). We described demographic and clinical features of EPIC-First patients and analyzed narrative responses from all participants to identify common barriers.

Results

Of 79 participants, 32 were EPIC-First. Mean DUP was 18 weeks (median 30, IQR 8–51), below the national average of 74 weeks. Most (n = 26) entered care through hospitalization, with 14 voluntary admissions. Distress was the most reported motivator for seeking help (75%). Thematic analysis revealed three barriers: stigma, limited awareness of symptoms or services, and unhelpful provider responses.

Conclusion

Reducing DUP must be paired with strategies to promote more supportive, non-coercive access. HSEs offer insight into how interpersonal and structural factors shape care trajectories.

Introduction

The primary objective of early detection strategies in psychosis is to reduce the duration of untreated psychosis (DUP). The average DUP in the U.S. is approximately 74 weeks [1]. Extended DUP has been associated with greater individual distress and poorer long- term prognosis [2].

Coordinated Specialty Care (CSC) clinics are an effective treatment modality for first episode psychosis (FEP), particularly for those with shorter DUP [3]. Despite the expansion of CSC programs, barriers remain for many individuals attempting to access care [4]. Research shows that stigma, lack of knowledge about serious mental illness, and uncertainty about treatment options are key delays in help-seeking [5–8].

EPIC-NOLA, a CSC clinic in New Orleans, Louisiana, previously published that amongst their patient population, establishing CSC care after their first help seeking episode (HSE) was correlated with improved outcomes–shorter DUP and less hospitalizations after intake at the clinic– when compared to those with multiple HSEs [9]. Several questions were left at the conclusion of this study that are the focus of this brief report. Given better outcomes of patients who landed at “EPIC-First” (after one HSE):

1. What are the demographics of these patients who were able to establish CSC care after the first HSE? Are there shared characteristics among this group that could inform targeted outreach and engagement strategies?

2. What qualitative factors in help seeking (beyond the numbers of DUP and hospitalizations) are influencing patients ability to get this care?

The purpose of this brief communication is to follow up on these two questions, building depth in understanding patient pathways to EPIC-NOLA. The goal is to better inform targeted interventions for early detection at EPIC-NOLA to reduce DUP and engage in care before symptoms worsen. By examining the nature and barriers within patients’ first help-seeking episode, CSC clinics can better understand the interpersonal and institutional factors that facilitate or impede access to specialized care.

Methods

This was a retrospective chart review of a convenience sample. All participants were active patients at EPIC-NOLA who completed a pathways to care (PTC) assessment between November 2018 and July 2024. The PTC is a semi-structured interview administered by trained staff that documents touchpoints from psychosis onset to EPIC-NOLA intake. It organizes these interactions into discrete Help-Seeking Episodes (HSEs), defined as distinct events in which the patient or a community member actively sought help for psychotic symptoms [10, 11]. HSEs begin at the acute onset of psychotic symptoms and exclude prodromal or subclinical experiences. Each HSE records the timing, initiator, reason for seeking help, and outcome.

Duration of Untreated Psychosis (DUP) was defined as the number of days between the self-reported onset of acute psychotic symptoms and the patient’s intake at EPIC-NOLA. While other definitions in the literature may begin at prodromal onset or end at the first antipsychotic prescription, our operational definition aligns with the clinic’s role as an entry point for Coordinated Specialty Care [9].

The PTC includes both structured and open-ended items. Structured items capture predefined categories such as reasons for help-seeking (e.g., distress, safety concerns) and are summarized descriptively. Two free-text prompts invited narrative responses: (1) “What were the major problems you ran into as you tried to get help for symptoms?” and (2) “Knowing what you know now, what do you think could have been done differently to get you to EPIC-NOLA faster?”.

Two analytic samples were defined:

1. Quantitative (EPIC-First subgroup): Thirty-two patients whose first HSE directly led to EPIC-NOLA intake (“EPIC-First”). Analyses described demographics, DUP, referral sources, and hospitalization characteristics. Patients who had dropped out or were discharged before completing the PTC were excluded.

2. Qualitative (all narrative respondents): Thirty-six patients who provided free-text responses, regardless of subgroup, were included in thematic analysis.

Narratives were coded inductively following Braun and Clarke’s six-phase framework: (1) data familiarization, (2) initial coding, (3) theme development, (4) theme review, (5) theme definition and naming, and (6) reporting [12, 13]. Two coders independently generated codes, refined themes collaboratively, and a third reviewer audited the final codebook for consistency. Although many responses were brief, they conveyed analyzable content.

Results

Of 79 participants who completed the PTC, thirty-two were classified as “EPIC-First.” Their ages ranged from 15 to 28 years old at intake (mean age = 21). This subgroup was predominantly black-identifying males with Medicaid referred to EPIC-NOLA from inpatient admissions (Table 1).

Table 1.

Demographics of EPIC-first subgroup

	n	%
Sex
Male	19	59
Female	12	38
Transgender	1	3
Race
Black	17	53
White	8	25
Asian	3	9
Hispanic	3	9
Other	1	3
Insurance
Medicaid	25	78
Private	7	22
Referral Source
Inpatient	22	69
Outpatient	6	19
Self	4	12

*Two patients declined to complete the demographics portion of the PTC assessment, therefore demographics are n = 32

The mean DUP was 18 weeks, median 30 weeks, IQR 8–51 weeks. The shortest DUP obtained was 2 weeks.

EPIC-First patients most commonly had their first help seeking episode involve hospitalization (n = 26), both voluntarily (n = 14) and involuntarily (n = 12). Those who were hospitalized had shorter DUPs and less family involvement compared to those not hospitalized (Table 2). Only four EPIC-First patients went directly to an outpatient mental health clinic to seek help.

Table 2.

Characteristics of hospitalized vs not hospitalized in the EPIC-first subgroup

	n	Mean DUP (weeks)	Median DUP (weeks)	Family Involvement
Hospitalized	26	38	24	15 (58%)
Not Hospitalized	8	46	40	7 (88%)

For the secondary analysis, we examined both structured and open-ended PTC data. First, across the full cohort, patients could select multiple predefined categories as reasons for seeking help. The most common responses were individual distress (75%), concern for their own safety (67%), and concern for others’ safety (67%). Separately, among the 36 patients who provided free-text responses, thematic analysis identified three overarching barriers to accessing FEP care: stigmatization, lack of awareness, and provider-related barriers.

Stigmatization

Patients often concealed symptoms due to fear of judgment.

Sample patient statement: “Judgment from family made me doubt my diagnosis.”

Lack of awareness

41% of this group of patients reported not understanding the severity of their symptoms. 35% reported not knowing where to go for help.

Sample patient statement: “I didn’t know anything was wrong with me.” Another reported, "I wouldn’t have thought about going to outpatient instead of hospitalization.”

Provider-related barriers

Several patients reported dismissive or unhelpful interactions with initial healthcare providers.

Sample patient statement: “If they had taken me more seriously, I might’ve gotten help sooner.”

Additionally patients emphasized a desire for more individualized and validating healthcare encounters. Some also expressed regret for not disclosing symptoms earlier or not recognizing the seriousness of their experiences. While these were not common enough responses to be highlighted as main themes, they are notable as goals for future outreach in improving patient care.

Discussion

This brief report follows up a prior study at EPIC-NOLA to answer in depth questions regarding the EPIC-First subgroup and themes regarding barriers to help seeking. EPIC-First patients whose initial pathway involved a single hospitalization had shorter DUPs than the national average and experienced fewer subsequent hospitalizations after intake, compared with patients who had multiple HSEs. Yet while shorter DUP typically correlates with better clinical outcomes, our findings raise questions about the hidden emotional or systemic costs that may accompany these gains. In our sample, the shortest DUP (2 weeks) resulted from engagement with police services. Patients in the EPIC-First cohort nonetheless described barriers and difficulties in accessing care. While this underscores the utility of DUP as a benchmark for timely treatment, prior research has noted that certain pathways—such as police involvement—may be perceived as aversive or stigmatizing.

In the EPIC-First group, 54% of hospitalizations were voluntary and 46% involuntary. Patients who avoided hospitalization had greater family involvement. These results, combined with the thematic analysis, support further research and outreach focused on stigma reduction and increased awareness of symptoms and healthcare resources for both patients and family members.

The narratives in the thematic analysis highlight the importance of considering not only the speed of accessing care, but also the nature of the distinct journeys individuals take beforehand. The finding that some patients were referred directly from schools or outpatient providers underscores the potential exists for non-traumatizing pathways into care. Themes from patient narratives also reveal gaps in insight and interpersonal dynamics—many patients wished they had spoken more openly with family or sought help earlier. These reflections highlight the need for stigma reduction and community education that extends beyond the individual patient. Communities with better support and mental health understanding may bolster an individual patient's ability to receive care quickly and effectively.

Limitations

This brief report describes a single-site sample and is therefore limited by its modest size and limited generalizability. Reliance on self-reported symptom onset introduces subjectivity into DUP estimates, and retrospective narrative data are subject to recall bias. Finally, quantitative analyses were restricted to the EPIC-First subgroup while qualitative analyses included all patients who provided free-text responses, creating asymmetry across study aims; however, these complementary approaches together offer a more nuanced picture of pathways to care in early psychosis.

Conclusion

This study highlights the importance of examining help-seeking episodes as distinct, analyzable components within the broader trajectory to FEP care. While reducing DUP remains a vital goal, it is equally important to consider the context in which care is accessed. Many patients in this study experienced stigma, dismissiveness, or trauma en route to treatment, despite the fact they were in a statistically better “EPIC-First” subgroup. Voluntary admissions can reinforce agency, collaboration, and trust in the treatment team. Patients are more likely to perceive care as supportive rather than punitive. Involuntary admissions, while sometimes clinically necessary, can generate feelings of coercion, trauma, or stigma. This can undermine trust in services, leading to disengagement after discharge.

Efforts to reduce DUP must go beyond systemic efficiency and address interpersonal stigma and institutional responsiveness. Targeted outreach to groups likely to encounter youth with emerging psychosis—schools, shelters, juvenile justice programs—may work to intercept earlier via streamlined referrals improving outcomes. Public health campaigns such as EPIC-NOLA’s CALM initiative including billboards and social media outreach represent promising strategies.

Understanding individual help-seeking journeys—and the systems through which patients pass—can help optimize early detection strategies. Increased investment in community education, cross-sector collaboration, and non-coercive pathways to care are critical to ensuring that patients enter CSC programs with both speed and dignity.

Author contributions

Corresponding Author: M.G (mguillo4@tulane.edu), E.W., M.B., C.O.A, S.C, A.Y. and A.W. provided substantial editing to the manuscript.

Funding

No funding was received to assist with the preparation of this manuscript. The authors have no competing interests to declare that are relevant to the content of this article.

Data availability

The data that support the findings of this study are not openly available to preserve individual privacy and are available from the corresponding author upon request. Data are stored in a secured Redcap database affiliated with Tulane University and the Early Psychosis Intervention Clinic of New Orleans.

Declarations

Ethics approval and consent to participate

This inclusion of retrospective chart review data involving human participants was in accordance with the ethical standards of the institutional and national research committee. The Tulane University Institutional Review Board approved all research protocols. All patients who completed the Pathways to Care assessments received and signed research-specific informed consent paperwork.

Consent for publication

All patients who completed the Pathways to Care assessments received and signed research-specific informed consent paperwork.

Competing interests

The authors declare no competing interests.