early psychosis literature review

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• Published: 06 November 2021

Structure and stability of symptoms in first episode psychosis: a longitudinal network approach

• Siân Lowri Griffiths   ORCID: orcid.org/0000-0003-0031-7174 1 ,
• Samuel P. Leighton   ORCID: orcid.org/0000-0002-3999-4204 2 ,
• Pavan Kumar Mallikarjun 1 ,
• Georgina Blake 3 ,
• Linda Everard 4 ,
• Peter B. Jones   ORCID: orcid.org/0000-0002-0387-880X 5 ,
• David Fowler 6 ,
• Joanne Hodgekins 7 ,
• Tim Amos 8 ,
• Nick Freemantle 9 ,
• Vimal Sharma 10 ,
• Max Marshall 11 ,
• Paul McCrone 12 ,
• Swaran P. Singh 13 ,
• Max Birchwood 13   na1 &
• Rachel Upthegrove   ORCID: orcid.org/0000-0001-8204-5103 1 , 3   na1  

Translational Psychiatry volume  11 , Article number:  567 ( 2021 ) Cite this article

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• Schizophrenia

Early psychosis is characterised by heterogeneity in illness trajectories, where outcomes remain poor for many. Understanding psychosis symptoms and their relation to illness outcomes, from a novel network perspective, may help to delineate psychopathology within early psychosis and identify pivotal targets for intervention. Using network modelling in first episode psychosis (FEP), this study aimed to identify: (a) key central and bridge symptoms most influential in symptom networks, and (b) examine the structure and stability of the networks at baseline and 12-month follow-up. Data on 1027 participants with FEP were taken from the National EDEN longitudinal study and used to create regularised partial correlation networks using the ‘EBICglasso’ algorithm for positive, negative, and depressive symptoms at baseline and at 12-months. Centrality and bridge estimations were computed using a permutation-based network comparison test. Depression featured as a central symptom in both the baseline and 12-month networks. Conceptual disorganisation, stereotyped thinking, along with hallucinations and suspiciousness featured as key bridge symptoms across the networks. The network comparison test revealed that the strength and bridge centralities did not differ significantly between the two networks (C = 0.096153; p  = 0.22297). However, the network structure and connectedness differed significantly from baseline to follow-up (M = 0.16405, p  = <0.0001; S = 0.74536, p  = 0.02), with several associations between psychosis and depressive items differing significantly by 12 months. Depressive symptoms, in addition to symptoms of thought disturbance (e.g. conceptual disorganisation and stereotyped thinking), may be examples of important, under-recognized treatment targets in early psychosis, which may have the potential to lead to global symptom improvements and better recovery.

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Introduction.

Psychosis is a disorder of complex psychopathology, with heterogeneous illness trajectories, particularly in the early stages [ 1 ]. Although early recognition and treatment bring substantial benefit [ 2 ], outcomes remain poor for many with first episode psychosis (FEP) [ 3 ]. Understanding how symptoms are structured, and which key symptoms play a pivotal role in maintaining psychopathology, may help to identify new treatment targets and improve outcomes.

Symptom interactions in early stages of illness are likely to be fluid and may change in strength and quality over time [ 4 ]. The interconnectedness of positive, negative and co-morbid affective symptoms in psychosis has previously been explored based on latent structures of symptomatology [ 5 , 6 ], whereby symptoms may be connected via a single underlying latent variable (psychosis), and non-psychosis symptoms considered of secondary importance [ 6 ]. However, it is also suggested that the flame of positive symptoms is driven by affective dysfunction in the early years, and primary negative symptoms become prominent only after acute psychosis wanes [ 7 , 8 ]. With the availability of novel modelling statistics and large longitudinal data, it is now possible to explore such assumptions. Network modelling of psychopathology does not presume a latent variable: individual symptoms are connected by statistical relationships, and large datasets can be modelled to reveal new structures [ 9 , 10 , 11 ]. Network analyses completed over different time-points can explore the connectivity, stability, and structure of symptoms over time, which may provide key information for interventions targeted at individuals likely on a pathway to treatment resistance [ 12 ].

Network analysis studies in chronic schizophrenia have identified central symptoms such as paranoid ideation, apathy, avolition, and depression, which are reported to activate other symptoms via a contagion effect, leading to the maintenance of psychopathology [ 13 , 14 , 15 , 16 , 17 , 18 ]. Others have explored changes in network structure in those with and without remitted status [ 15 , 17 , 19 ], or in response to antipsychotic treatment [ 4 , 14 , 20 , 21 ]. Whilst these findings are informative, they are limited to older individuals with enduring illness, and have been conducted with relatively small sample sizes.

Identifying early treatment targets in the ‘critical’ phase of illness has the potential for greatest impact [ 22 ]. A small number of studies have applied network modelling to understand psychosis symptoms in young people. Preliminary findings suggest that the strength of network architectures and symptom connectedness may indicate psychosis liability. However, these findings remain exploratory given the small ( N  = 16) cross-sectional nature of Schmidt et al’s study [ 23 ], and the second study by Wigman et al was based on a community (rather than a clinical) sample with psychotic-like-experiences [ 24 ]. Finally, two recent papers in FEP have demonstrated the potential role of depression and general psychopathology with psychotic symptom expression. In the first, Betz and colleagues (2020) showed that general psychopathology mediated the relationship between the burden of life events and expression of psychotic symptoms, supporting an affective pathway to psychosis [ 6 , 25 , 26 ]. Second, Herniman and colleagues (2021) demonstrated that depression symptoms were highly interrelated with positive and negative symptoms, suggesting that depression symptoms might be better conceptualized as intrinsic to psychosis [ 27 ]. Though these studies are informative, they are limited by their cross-sectional design and small samples of young people with FEP.

In this present study, we used a large, diverse, national FEP cohort to explore the structure and inter-relationships between symptoms in early psychosis, using a robust network analyses design to: (a) identify network structures at baseline and 12-months follow-up; and b) identify key central and bridge symptoms that may offer treatment targets for novel interventions.

The EDEN dataset is a longitudinal naturalistic study of 1027 individuals with FEP, recruited from 14 early intervention services (EIS) across England (2005 to 2010; ethical approval REC: 05/Q0102/44.); the methodology and baseline characteristics have been outlined previously [ 28 ], but an overview of sample characteristics can be found in Table 1 . In summary, observer rated assessments were conducted at baseline (upon entry to EIS), and at a 6 and 12-month timepoint. Complete data on the variables of interest were available for 718 participants by 12-month follow-up.

The authors assert that all procedures contributing to this work comply with the ethical standards of the relevant national and institutional committees on human experimentation and with the Helsinki Declaration of 1975, as revised in 2008. All procedures involving human patients were approved by Suffolk Local Research Ethics Committee, UK. Approval number: 05/Q0102/44. Written informed consent was obtained from all patients.

Assessments

The Positive and Negative Syndrome Scale (PANSS) [ 29 ]. PANSS consists of 30-items measuring severity of positive, negative and general symptoms. Each item is scored between 1 (= absent) to 7 (= extreme). For this study, the Positive Scale (seven items) and Negative Scale (seven items) were used.

The Calgary Depression Scale for Schizophrenia (CDSS) [ 30 ]. The CDSS includes a total of 9 depressive symptoms (eight structured questions and one interviewer observation) and a scale that ranges from 0 (absent) to 3 (severe).

Statistical analysis

Descriptive data analysis and network modelling were carried out using R, Version 4.0.3 [ 31 ]. (Code for the network analysis is available in the supplementary materials).

Missing data

For the full EDEN sample ( N  = 1027), there were 895 complete cases at baseline, 757 complete cases at 12 months, and 618 complete cases across the two time points. Item level data were missing for 6.2% of the sample at baseline, and 23·9% at 12-months. Missing data were imputed using an iterative Markov Chain Monte Carlo method, which can concurrently generate Bayesian simulations for binary distributions for cases with incomplete data for all cases [ 32 ]. While missing network data can be problematic, there is a lack of simulation studies testing the performance of imputation techniques alongside variable selection methods. We chose EBICglasso over pairwise / likelihood techniques, based on prior research within the structural equation literature showing superior performance of lasso-based methods when the number of variables with missing is large, and when there’s a range of parameters which are also likely to be moderately or highly correlated [ 33 ]. Nevertheless, sensitivity analyses were conducted using the complete cases to compare any network differences when using the imputed data (please see results section). Finally, we decided not to include the 6-month network due to the increased complexity it would add to the analysis, reducing the interpretability.

Network estimation

Two networks were estimated using the full EDEN sample ( N  = 1027), which included complete and imputed cases at baseline and 12-months. We used the ‘bootnet’ package [ 11 ] which implements the ‘EBICglasso’ algorithm from the ‘qgraph’ package [ 34 ], in turn uses the ‘glasso’ algorithm from the ‘glasso’ package [ 35 ]. Network structures were estimated using regularised partial correlation, with coefficients ranging from -1 to 1, representing the association between two nodes after controlling for all other possible information. Partial correlations can be visualised in a weighted network structure with each node representing a variable (e.g. symptom), and each edge showing that two variables are not independent after conditioning all other variables. The edge weights are their partial correlation coefficients. Given the ordinal nature of the data, Spearman’s correlations were used to create covariance matrix via the ‘lavaan’ package [ 36 ]. The resulting covariance matrix is inputted into the ‘EBICglasso’ algorithm which uses the least absolute shrinkage and selection operator (lasso) regularisation [ 37 ], resulting in sparse networks. ‘EBICglasso’ selects the lasso tuning hyperparameter (λ) which minimises the Extended Bayesian Information Criterion (EBIC) [ 38 ]; the EBIC hyperparameter (γ) was set to zero in this study.

There remains contention as to whether regularization estimators, such as glasso, add benefit over more traditional frequentist approaches when estimating psychological networks. Indeed, it has recently been shown that classic methods, such as maximum likelihood estimator (MLE), outperform regularization when applied to low dimensional settings, common in psychology [ 39 , 40 ]. There is an inflated false positive rate inherent in regularization estimators, such as lasso, when the ratio of parameters to observations is low. We chose a regularization algorithm in this study because of its superiority in performance over non-regularized models when there is a wide range of predictor variables, which are likely to be highly correlated [ 33 , 40 ]. In such instances, lasso models have much lower Type II error rates, and are less likely to omit truly positive associations, suiting the more exploratory nature of this study [ 40 ].

The network structures are plotted using the ‘qgraph’ function (from ‘qgraph’ package) [ 34 ]; blue edges indicate positive partial correlations, and red edges indicatingnegative partial correlations. Nodes are placed using a modified version of the Fruchterman-Reingold algorithm [ 41 ], constraining the layout to be equal across the networks using the ‘averageLayout’ from the ‘qgraph’ package, enabling comparison. Maximum edge value was set to 0.5367 (the strongest edge identified across both networks); meaning saturation and edge thickness can be compared across graphs.

Network comparison test

A permutation-based test implemented within the ‘NetworkComparisonTest’ package [ 42 ] compared the baseline and 12 month symptom networks on global structure, overall connectivity level by average strength of all edge weights, and the difference in strength of individual edge weights. Finally, centrality estimates were computed using the “test centrality” command, which statistically assesses the centrality of symptoms across the two networks.

Centrality and bridge centrality estimation

The strength of nodes within each network were established by summing the absolute edge weights connected to a particular node [ 43 , 44 , 45 ]. The importance of each node in acting as a bridge to the three communities of symptoms (other than the community it originates), was calculated using the recently defined concept of bridge centrality implemented in the ‘networktools’ package [ 46 ]. We used the bridge strength estimate which indicates a node’s total connectivity with other communities. The top 20% scoring nodes (a cut-off giving an acceptable balance between sensitivity and specificity) on bridge strength was also indicated graphically [ 47 ].

Network accuracy and stability assessment

Bootstrapping methods were performed using the ‘bootnet’ package [ 48 ] to assess the accuracy and stability of the derived network parameters. We bootstrapped 95% CIs around the edge weights, the significance (α = 0·05) between the edges, and the significance (α = 0.05) between the centrality metric of the nodes for each network. The stability of the centrality indices was assessed via a case-dropping bootstrap, which were summarised using CS-coefficients (correlation stability), quantifying the proportion of the data that can be dropped to retain a correlation of at least 0.7 with 95% certainty. The CS-coefficient should be ideally above 0.5 but at least above 0.25 [ 49 ].

Full demographic characteristics of the EDEN sample have been outlined previously [ 28 ]. In summary, the sample ( n  = 1027) had a mean age of 21.3 years, 69% were male, and 70% were White British. The baseline network had greater positive, negative, and depressive symptoms compared to the 12-month network (Table 2 ).

Baseline network

At baseline, 52.2% of all possible edges were retained in the regularized networks. The network structure can be visualised in Fig. 1a . Distinct symptom communities can be visualised based on the three original symptom groups: PANSS Positive, PANSS Negative and CDSS.

A network structure for baseline is depicted in 1(a), and 1(b) for the 12 month network. Nodes (circles) represent individual symptoms. Orange nodes represent depressive items from the Calgary Depression Scale for Schizophrenia (CDSS). Blue nodes represent 7 negative symptoms from the PANSS scale, and green nodes represent items from the PANSS positive scale. Edge weights (lines) represent the strength of association between symptoms. Blue edges represent positive associations and red edges represent negative associations; denser lines represent stronger connections. P1_ = Delusions; P2 = Conceptual Organization; P3 = Hallucinatory Behaviour; P4 = Excitement; P5 = Grandiosity; P6 = Suspiciousness/Persecution; P7 = Hostility; N1 = Blunted Affect; N2 = Emotional Withdrawal; N3 = Poor Rapport; N4 = Passive/Apathetic Social Withdrawal; N5 = Difficulty in Abstract Thinking; N6 = Lack of Spontaneity and Flow of Conversation; N7 = Stereotyped Thinking; C1 = Depression; C2 = Hopelessness; C3 = Self Depreciation; C4 = Guilt Ideas of Reference; C5 = Pathological Guilt; C6 = Morning Depression; C7 = Early Awakening; C8 = Suicide; C9 = Observed Depression.

Depression (C1), Delusions (P1), and Lack of Spontaneity (N6) had the highest node strength centrality in the baseline network (Fig. 2 ). The top 20% scoring nodes on bridge strength (Fig. 3 ) were: blunted affect (N1), stereotyped thinking (N7), conceptual disorganization (P2), hallucinatory behaviour (P3), and suspiciousness (P6). Negative symptoms formed bridges with positive symptoms: stereotyped thinking bridged with conceptual disorganisation, and blunted affect was negatively associated with hostility. Depressive symptoms formed bridges with positive symptoms: Hallucinations and suicide, and suspiciousness and hopelessness were positively associated (Fig. 3a ).

Standardized z-scores are plotted for ease of interpretation. Higher scores represent higher centrality estimates (i.e. the symptom has greater influence in the network).

Network structures for baseline (3 a ), and 12-months (3 b ), display the top 20% scoring nodes on bridge strength (a cut-off recommended as giving an acceptable balance between sensitivity and specificity). Yellow nodes represent the bridge nodes. Orange nodes represent depressive items from the CDSS scale. Blue nodes represent 7 negative symptoms from the PANSS scale, and green nodes represent items from the PANSS positive scale. See Fig. 1 caption for node key.

12-month network

At 12-months, 50.02% of all possible edges were retained in the regularized network. Similar visualisations for baseline network can also be identified in the 12-month network, with strong positive associations between items as visualised in the baseline network (Fig. 1b ). Depression (C1) had the highest node strength in the 12-month network (Fig. 2 ). The top 20% bridge symptoms included: depression (C1), conceptual organisation (P2), stereotyped thinking (N7), hallucinatory behaviour (P3), and suspiciousness (P6). Similar to the baseline network, stereotyped thinking bridged with conceptual disorganisation, and the depressive items bridged with positive symptoms. Hallucinations and the suicide item were positively related, in addition to positive associations between observed depression with suspiciousness and hallucinations (Fig. 3b ).

Network comparison

Our results indicate that the baseline and 12-month networks differed significantly in overall structure (M = 0.16405, p  = <0.0001) and connectivity (S = 0.74536, p  = 0.02), but did not differ significantly in overall strength centrality and bridge centrality (C = 0.096153; p  = 0.22297).

The global strength and overall connectivity of the baseline network was stronger. Similarly, for the structure, the baseline network retained more edges than the 12-month network. Ten edges were significantly different across the baseline and 12-month networks. Excitement (P4) with emotional withdrawal (N2), delusions (P1) with lack of spontaneity (N6), hallucinatory behaviour (P3) with stereotyped thinking (N7), suspiciousness (P6) with depression (C1), excitement (P4) with guilt ideas of reference (C4), passive social withdrawal (N4) with pathological guilt (C5), pathological guilt (C5) with morning depression (C6), grandiosity (P5) with early awakening (C7), abstract thinking (N5) with suicide (C8), and depression (C1) with observed depression (C9).

Network accuracy and stability

The bootstrap analyses showed that the networks were very stable and edge weights were accurately estimated. The results for the edge weight bootstrap, edge weights significance testing, and strength centrality difference testing can be visualised in the supplementary material (Please see Fig. 1 – 6 in the supplementary material). For the subset bootstrap, the two networks showed acceptable centrality stability (Figures 7 and 8 in the supplementary materials). These results are consistent with the CS-coefficient, which was 0.75 for strength for the baseline network, and 0.75 for strength in the 12-month network, suggesting that the networks remained stable.

Sensitivity analyses

Because of the high level of missing data, sensitivity analyses were conducted using the complete cases ( N  = 718). The data are available in the supplementary material (Figures 9 – 19 ), but in sum, the baseline and 12-month networks remained dense (47% and 50.6%, respectively), and stable (0.75). Key central and bridge symptoms remained the same, though unlike the networks with imputed cases, the overall network structure and connectivity was not significantly different across the two time points.

This study presents the first analysis of symptom networks in a large, representative FEP sample, over two timepoints. Key findings were as follows: the networks differed significantly in terms of overall structure and connectedness, but central symptoms did not differ significantly. Depression featured consistently as a central symptom in the baseline and 12-month network. Conceptual disorganisation, stereotyped thinking, along with hallucinations and suspiciousness, remained key bridge symptoms across the networks.

It has previously been shown that network structures and connectedness differ for those in remission [ 15 , 17 , 19 ]. Within the present study, the difference in network structure and connectedness may reflect an improvement in symptoms by 12 months. However, interestingly, we showed that symptom centrality remained unchanged across the networks. Identifying key symptoms which become prominent in the networks over this critical illness period may serve as fruitful treatment targets to promote recovery.

Influential network symptoms

The emergence of depression as an influential symptom in the baseline and 12 month network is in line with an affective pathway to psychosis, where psychosis symptoms may result from heightened emotional reactivity [ 7 , 26 , 50 ]; potentially reflecting a continuation of a longstanding developmental trajectory [ 51 ]. Recent network studies add to this evidence, demonstrating that FEP is rooted in the context of both earlier sub-threshold symptoms as well as non-psychotic symptoms [ 51 ]. A recent cross sectional network study by Bet and colleagues also demonstrated that the relationship between adverse life events and psychosis symptoms was only present via general symptoms such as depression and guilt feelings [ 25 ]. Burden of recent life events predicted depression and guilt 3 months later, demonstrating the temporal relationship between life event burden and severity and persistence of affective psychopathology [ 25 ]. In the present longitudinal paper, the presence of central depressive symptoms early in the illness course may suggest that affective symptoms may underly the expression of other psychotic symptoms [ 52 ]. Though psychotic symptoms had significantly reduced by follow-up, the centrality of affective symptoms might mean that the network is descended into a state of vulnerability, where a potential worsening of depressive symptoms (e.g., triggered by a burdensome life event), may lead to a global worsening of psychosis symptoms.

An alternative explanation is that depressive symptoms may be secondary to the resolution of frank psychosis. Post-psychotic depression is prevalent following the initial episode and might account for the high rates of suicidality following FEP [ 8 , 53 ]. It often arises as a result of negative illness appraisals once insight is regained [ 8 ]. However, within our networks, depression remained a central symptom from baseline, and consistent bridge-symptoms between depression and psychosis symptoms were observed.

When bridge-symptoms are present, the likelihood of other communities of activated symptoms increases. Bridge-symptoms can help to explain the continuity and comorbidity of depression and psychosis [ 10 ]. Within this study, a bridge between hallucinations and suicide was consistent across the two time points. This complex interplay has been demonstrated previously; predominantly, suicidality is associated with auditory hallucinations [ 54 ]. We have shown that individuals with FEP and depression experience greater perceived malevolence in voices and greater engagement [ 8 ], and command hallucinations, where a voice is perceived as power and omnipotent, is associated with suicidal behaviour [ 55 ].

Within our networks, bridges also emerged between suspiciousness with depression and hopelessness; again, a phenomenon reported in prior research where those with

persecutory delusions encounter depression, especially when they feel less powerful than their persecutors [ 8 , 56 ]. This relationship is also replicated in previous network studies in males with schizophrenia, and recently in young people with FEP [ 15 , 27 ]. Here, these studies also showed depression as being intrinsic to psychosis symptoms. A longitudinal network approach comparing individuals across different illness stages would be necessary to establish the causal relationship between depression and the expression of psychosis symptoms.

Finally, it is also notable that conceptual disorganisation and stereotyped thinking, featured consistently as central and bridge symptoms in the networks. Formal thought disorder, which is characterised by disturbances in thought, language and communication [ 57 ], has been identified as a core feature in those with enduring illness and is linked to adverse outcomes, including: higher relapse and re-hospitalisation rates [ 58 ], and poorer social and occupational functioning [ 59 , 60 ]. Although the impact of thought disorder on illness manifestation in the early stages of illness is generally under-recognised, in a study of individuals at-risk of psychosis, those with disturbances in thought and communication were more likely to transition to psychosis and have poorer functional outcomes [ 61 ]. This may suggest that the emergence of thought and communication disturbances in early psychosis may be a marker of long-term poor outcomes [ 59 ]. Indeed, it has previously been proposed that thought disorder is a manifestation of a core deficit of ‘classical’ schizophrenia, characterised by pervasive brain changes, cognitive impairment, and entrenchment of poor functioning [ 62 , 63 ]. This psychopathological trajectory also invokes the idea of Hebephrenia, and the presence of these characteristic may indicate a more pervasive course of illness [ 64 ].

Implications

Identifying key central and bridge symptoms in developing psychopathology is potentially important, as they may activate other symptoms in the network, creating self-reinforcing feedback loops [ 15 ]. Targeting interventions at key symptoms may break down this maintenance cycle and provide a boost in momentum required for global improvement [ 4 ]. Symptoms of formal thought disorder (e.g. conceptual disorganisation, stereotyped thinking and excitement), in addition to depressive symptoms, showed prominence in the networks at baseline and follow-up; these symptoms may offer more refined targets for novel stratified treatments in early phases of psychosis. It is apparent that a number of individuals in FEP continue to have poor outcomes and remain unresponsive to ‘gold standard treatments’ [ 65 ]. Those with comorbid depression in psychosis are shown to have poor outcomes [ 66 , 67 ]. Conventional interventions for those with particularly complex symptom presentations, such as those presenting with early thought disorder, are also shown to be less effective [ 68 ]. This highlights the need for better recognition of these symptoms in early psychosis, in addition to improved, and stratified interventions for subgroups who are unlikely to respond to conventional treatments. Thus, a better understanding of the mechanisms by which these underrecognized early symptoms might facilitate change in the entire symptom network may prove beneficial [ 4 ]. Future work may seek to clarify whether network structures differ over time in those with and without a remitted status. This would provide clarity on the causality of network structures over time, and how this may relate to illness outcome and progression. Further research is also necessary to establish whether the influence of depression on psychosis symptoms is an integral feature of the illness, or whether it most prominent at particular time points, such as at 12 months, as we demonstrated within our networks.

Strengths and limitations

A strength of this study is the examination of a heterogenous sample from a large longitudinal national cohort of young people early in their illness course. In addition, we add to previous network studies in psychosis by including data from male and female participants at two time-points, and use novel statistics to compare network strength, centrality, and connectivity. Although we report on a large national sample of young people with psychosis, data were missing, and subsequently imputed for 23% of our sample. However, results of our sensitivity analyses showed consistent findings regarding network density, stability, and symptom centrality. A second limitation is that we did not include socio-demographic factors within our networks. Such factors (e.g. sex, age of onset, level of education) are shown to influence illness outcomes in schizophrenia, however, their influence on symptom expression remains inconclusive, particularly in the early phase of illness [ 69 ]. Two studies within FEP showed that despite differences between males and females on age of onset, premorbid functioning, and duration of untreated psychosis, there were no differences in symptoms severity at presentation [ 70 , 71 ]. Whilst this warrants investigation at a network level, inclusion of these factors within our network is beyond the focus of our research question. Third, we acknowledge that the group-level nature of our analysis does not allow for conclusions to be drawn on an individual level. And finally, though PANSS scores differed between the networks, overall, the scores are relatively low. Comparisons with network structures in those with more severe and enduring psychopathology, as well as those at clinical high risk of psychosis, may be more informative in understanding illness stage and progression. Within the current design, we were not able to establish whether depression emerges as prominent not just at 12 months, but potentially earlier, during the prodrome or sub-threshold stages.

We provide novel findings of symptom networks in early psychosis with robust data from a large longitudinal sample. Depressive symptoms, in addition to conceptual disorganisation and stereotyped thinking, which are often under-recognised in early psychosis, may potentially serve as novel symptom targets, which if adequately addressed, may have the potential to lead to global symptom improvements and better recovery.

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Acknowledgements

The National EDEN study was funded by the National Institute of Health Research (NIHR) under the Programme Grants for Applied Research (RP-PG-0109-10074). Birmingham and Solihull NHS Foundation Trust acted as study sponsor. M.B. and S.P.S are part funded by the National Institute for Health Research through the Applied Research Collaboration West Midlands (ARC-WM). P.B.J. is part funded by the NIHR ARC East of England. G.B. was supported by the University of Birmingham Department of Population Sciences and Humanities. S.P.L. is funded through a Clinical Academic Fellowship from the Chief Scientist Office, Scotland (CAF/19/04). The views expressed in this publication are those of the authors and not necessarily those of the NHS, NIHR, or Department of Health. We would like to thank the participants of the National EDEN study and the UK Clinical Research Network for study support.

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These authors contributed equally: Max Birchwood, Rachel Upthegrove

Authors and Affiliations

Institute for Mental Health, University of Birmingham, Birmingham, UK

Siân Lowri Griffiths, Pavan Kumar Mallikarjun & Rachel Upthegrove

Institute of Health and Wellbeing, University of Glasgow, Glasgow, UK

Samuel P. Leighton

College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK

Georgina Blake & Rachel Upthegrove

Birmingham and Solihull Mental Health Foundation Trust, Birmingham, UK

Linda Everard

Department of Psychiatry, University of Cambridge and CAMEO, Cambridge and Peterborough NHS Foundation Trust, Cambridge, UK

Peter B. Jones

Department of Psychology, University of Sussex, Brighton, UK

David Fowler

Norwich Medical School, University of East Anglia, Norwich, UK

Joanne Hodgekins

Academic Unit of Psychiatry, University of Bristol, Bristol, UK

Institute of Clinical Trials and Methodology, University College London, London, UK

Nick Freemantle

Early Intervention Service, Cheshire and Wirral NHS Foundation Trust, Liverpool, UK

Vimal Sharma

Lancashire Care NHS Foundation Trust, Preston, UK

Max Marshall

Institute for Life Course Development, University of Greenwich, London, UK

Paul McCrone

Mental Health and Wellbeing Warwick Medical School, University of Warwick, Coventry, UK

Swaran P. Singh & Max Birchwood

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Contributions

The data were analysed by S.L., S.L.G., and R.U. S.L.G., R.U, S.L., and G.B. drafted the manuscript with further input from M.B. and P.K.M. M.B. was the CI and grant holder, J.H., L.E., P.B.J., D.F., T.A., N.F., V.S., S.P.S., P.Mc., and M.M. contributed to the EDEN study design and execution. All authors approved the final manuscript.

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Correspondence to Siân Lowri Griffiths .

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RU reports grants from Medical Research Council, grants from National Institute for Health Research: Health Technology Assessment, grants from European Commission—Research: The Seventh Framework Programme, personal fees from Sunovion, outside the submitted work. PM reports grant from the Medical Research Council, and has received honorariums from Sunovion, Sage and Recordati outside of the submitted work.

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Figure 1. baseline bootstrapped ci of edge weights, figure 2. baseline bootstrapped difference tests for non zero edges, figure 3. baseline bootstrapped difference test between node strength, figure 4. twelve month bootstrapped ci of edge weights, figure 5. twelve month bootstrapped difference tests for non zero edges, figure 6. twelve month bootstrapped difference test between node strength, figure 7. baseline average correlations with sample case dropping bootstrapped, figure 8. twelve month average correlations with sample case dropping bootstrapped, figure 9. network visualisations for the sensitivity analysis, figure 10. strength centrality estimates for the sensitivity analysis, figure 11. top 20% scoring bridge nodes for the sensitivity analysis, figure 12. baselinebootstrapped ci of edge weights for the sensitivity analysis, figure 13. baseline bootstrapped difference tests for non zero edges for the sensitivity analysis, figure 14. baseline bootstrapped difference test between node strength for the sensitivity analysis, figure 15. baseline average correlations with sample case dropping bootstrap for the sensitivity analysis, figure 16. twelve month bootstrapped confidence intervals for the edge weights for the sensitivity analysis., figure 17. twelve month bootstrapped difference tests for non zero edges for the sensitivity analysis., figure 18. twelve month bootstrapped difference test between node strength for the sensitivity analysis, figure 19. twelve month average correlations with sample case dropping bootstrap for the sensitivity analysis, code final r, rights and permissions.

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Griffiths, S.L., Leighton, S.P., Mallikarjun, P.K. et al. Structure and stability of symptoms in first episode psychosis: a longitudinal network approach. Transl Psychiatry 11 , 567 (2021). https://doi.org/10.1038/s41398-021-01687-y

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• Published: 10 May 2024

The impact of early intervention psychosis services on hospitalisation experiences: a qualitative study with young people and their carers

• Tacita Powell 1 ,
• Nicholas Glozier 2 , 3 ,
• Katrina Conn 2 , 4 ,
• Rochelle Einboden 5 , 6 , 7 , 8 ,
• Niels Buus 9 , 10 ,
• Patrick Caldwell 11 &
• Alyssa Milton 2 , 3  

BMC Psychiatry volume  24 , Article number:  350 ( 2024 ) Cite this article

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While a core aim of early intervention psychosis services (EIPS) is to prevent hospitalisation, many with a first episode of psychosis (FEP) will require inpatient care. We explored young people’s (YP) and their carers’ hospitalisation experiences prior to and during EIPS engagement and how factors across these services influenced these experiences.

Using purposive sampling, we recruited twenty-seven YP, all of whom had been involved with the hospital system at some stage, and twelve support persons (parents and partners of YP) from state and federally funded EIPS in Australia with different models of care and integration with secondary mental health care. Audio-recorded interviews were conducted face-to-face or via phone. A diverse research team (including lived experience, clinician, and academic researchers) used an inductive thematic analysis process.

Four key themes were identified as influential in shaping participant’s hospital experiences and provide ideas for an approach to care that is improved by the effective coordination of that care, and includes this care being delivered in a trauma informed manner: (1) A two-way street: EIPS affected how participants experienced hospitalisation, and vice versa; (2) It’s about people: the quality and continuity of relationships participants had with staff, in hospital and at their EIPS, was central to their experience; (3) A gradual feeling of agency: participants viewed EIPS as both reducing involuntary care and supporting their self-management; and (4) Care coordination as navigation for the healthcare system: great when it works; frustrating when it breaks down.

Conclusions

Hospitalisation was viewed as a stressful and frequently traumatic event, but a approach to care founded on trust, transparency, and collaboration that is trauma-informed ameliorated this negative experience. Consistent EIPS care coordination was reported as essential in assisting YP and carers navigate the hospital system; conversely, discontinuity in EIPS staff and lack of integration of EIPS with hospital care undermined the positive impact of the EIPS care coordinator during hospitalisation. Care coordinator involvement as a facilitator, information provider, and collaborator in inpatient treatment decisions may improve the usefulness and meaningfulness of hospital interventions.

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Introduction

Early Intervention Psychosis Services (EIPS) provide multimodal interventions for young people (YP) with first episode of psychosis (FEP) and, in some programs, YP at ultra-high risk (UHR) of developing psychosis. EIPS aim to reduce the duration of untreated psychosis, improve symptoms, engage the YP in psychosocial recovery and restore a normal developmental trajectory [ 1 ]. An additional core goal is to reduce hospitalisation to minimise dislocation of the YP from their community [ 2 ] and avoid the potentially traumatic effects of inpatient environments [ 3 ]. Meta-analytic evidence suggests that despite there being a lower risk of hospitalisation in the early phase of EIPS treatment compared to treatment as usual, over a third of YP accessing EIPS required inpatient admission [ 4 ].

Australia has two parallel systems delivering EIPS care. State-funded EIPS teams are co-located with community mental health services within certain local health districts (LHDs) with links to psychiatric hospitals. In addition, a federal government initiative funded six ‘hub and spoke’ headspace centres nationwide to deliver EIPS at 14 sites (with a commitment to expanding this to 16 sites announced in 2022). Both state- and federally-funded EIPS aim to deliver care in line with Australia’s national guidelines on early psychosis within the limits of funding, resources, and staffing [ 2 ]. State EIPS exist within established LHD health systems, while federally-funded EIPS sit outside these systems [ 5 ].

For YP, hospitalisation involves risks of disruption to education, peer and family bonds, psychosocial growth, and identity formation during a critical time of development [ 6 ]. Hospitalisation during the early course of psychosis has complex effects on a YP’s capacity for self-management and self-determination, impacting appraisals of treatment, illness, and services [ 7 ]. Hospitalisation has been found to be a significant risk factor for developing post-traumatic stress disorder (PTSD) following FEP, with one study demonstrating inpatient subgroup prevalence was twice that of the community subgroup [ 8 ]. Prevalence rates for PTSD resulting from the trauma of psychotic symptoms and/or hospitalisation range from 11 to 67% with a median rate of 37% [ 3 ]. Experiences of seclusion and restraint in Australian hospitals have been described as traumatic, dehumanizing, and “anti-recovery”, where lack of empathy, poor communication and paternalistic attitudes are particularly harmful [ 9 ].

In the adult mental health literature, a systematic review of qualitative research examining hospitalisation experiences demonstrates the importance of relationships, reducing coercion, safety, and genuine patient-centred care [ 10 ]. These findings are mirrored in the literature on YP with FEP, which place a particular emphasis on the negative impact of lack of explanation, confusion, loss of autonomy and powerlessness in hospitalisation [ 11 , 12 , 13 ]. The experience of ambivalent feelings toward hospitalisation is a common theme across studies, with hospitals described as places of containment offering both safety from the outside world and a lack of safety due to coercion [ 10 , 11 , 13 , 14 ]. Persistent memories of negative experiences are common with protracted involuntary hospitalisation, distressing medication side effects, forced treatment and exposure to violence noted to be traumatising [ 15 ].

Qualitative studies examining carer experiences of hospitalisation when supporting a YP experiencing FEP have highlighted the distress associated with not receiving help until crisis point, lack of information provision, and the experience of feeling marginalised and distanced from their relationship with the YP [ 16 , 17 , 18 ]. Like YP, carers in these studies describe ambivalence, with admission perceived to provide protection as well as harm [ 17 ].

In general, the literature has focussed on the effect of hospitalisation on engagement with EIPS programs [ 19 , 20 ]. Coercive hospitalisation experiences, while leading to distress, were not found to impact initial engagement with EIPS [ 21 ]. Therapeutic dialogue within a trusting long-term partnership offers a different experience of care compared to hospitalisation, distinguishing it from past negative pathways into EIPS [ 21 , 22 ]. Conversely, inadequate discharge planning, gaps in service provision and geographical distance of EIPS from the hospital could negatively impact engagement [ 23 ]. No qualitative studies have examined the impact of EIPS on further hospitalisations or whether engagement with EIPS prior to hospitalisation impacts negative processes of confusion, trauma, involuntary admission, and length of stay.

Overall, qualitative research has chiefly focussed on the experiences of YP and carers in EIPS programs and how they relate to the recovery process [ 24 , 25 ]. There remains a gap in the literature regarding the specific effects of EIPS programs on hospitalisation experiences. The aim of this study was to increase understanding of YP and carer experiences of hospitalisation both prior to and during EIPS engagement and explore whether any hospital or EIPS service-related factors influenced these experiences. By comparing experiences of participants from state-based EIPS and federally-funded EIPS we have the opportunity to better understand how systems may influence transitions and collaboration between EIPS and hospitals and how this might impact relationships and effective communication — all of which are key factors in improving hospital experiences in FEP [ 11 , 17 ].

The design was 1:1 semi-structured interviews, analysed thematically [ 26 , 27 ]. The qualitative semi-structured interview schedule was developed by the research team, including mental health clinicians and researchers (including a researcher with a lived experience of accessing an EIPS in Australia as a client, and a SP) from a diverse range of demographic backgrounds (cultural, gender, region). The study took a critical realist orientation [ 28 ] in line with similar research in mental health settings [ 29 ] as understanding is constructed from our perspectives and experiences, through what is observable from these interviews. The research drew on qualitative interviews that were conducted as part of the Early Psychosis Youth Services (EPYS) Evaluation project [ 30 ], an independent evaluation of the 6 federally-funded EIPS, commissioned by the Federal Government with partners EY (Pty Ltd), the University of Sydney, and The George Institute for Global Health. Full study methods are described in detail in a linked paper [ 5 ]. Acknowledging its challenges [ 31 ], we made use of the consolidated criteria for reporting qualitative research (COREQ) [ 32 ]. See Supplementary File 1 .

The study took place in six community-based EIPS located in New South Wales and the Northern Territory, Australia. It included services from three new federally-funded services (two in Western Sydney and one in Darwin) and three state-funded services (one in Western Sydney whose catchment overlapped with federally-funded services; two fully integrated with co-located secondary mental health services in inner Sydney).

Participants, recruitment, and consent

Participants were YP and their carers accessing a participating EIPS. The eligibility criteria for young people included: (1) aged 12–26 years; (2) clinician nominated; (3) minimum two weeks of service engagement; (4) provided written consent (noting additional parent or guardian consent requirements for those under 18 years of age [ 5 ]); and (5) an experience with the hospital system. Eligibility criteria for family or carers included: (1) being 18 years of age or over; and (2) being a parent, guardian, family member, partner or friend of a current EIPS client.

Recruitment and the two-stage consent is described in detail elsewhere [ 5 ]. In brief, eligible participants were recruited through clinician referral using a purposive sampling approach, in which the study team liaised continuously with recruiting sites to facilitate the recruitment of clients from a range of different clinical stages, ages, genders, and backgrounds including young people from culturally and linguistically diverse backgrounds and those who identified as First Nations people (a person with Aboriginal and/or Torres Strait Islander heritage) [ 26 ]. Informed consent was obtained from legal guardian(s) of minor participants following the two-stage process [ 5 ]. Only one YP decided not to participate after an initial clinician referral. The number of participants who declined at clinician invitation was not recorded.

Data collection

After informed consent, audio-recorded interviews were conducted either face-to-face at the EIPS or via telephone between Dec 2019 and May 2020. They were conducted by either AM, a psychologist and qualitative researcher, or TP, a senior psychiatry registrar. A support person was present for the interview if requested by the participant. An interview guide is provided in Supplementary Files 2 and 3 . The mean interview duration was 57 min (s.d.: 18 min) for YP and 68 min (s.d.: 17 min) for carers. Participants were provided with a $25 AUD supermarket voucher in acknowledgment of their time.

Interviews were transcribed using the NVivo Transcription Service, then anonymised and checked for accuracy by four members of the research team. Interviews were transcribed as they were conducted, and the team met weekly throughout the interview process to engage in iterative discussion about the main themes. Data were interpreted thematically using an established six step process of qualitative analysis [ 27 ] The six steps include [ 5 ]: (1) Become familiar with the data : the team members were very familiar with the data as they had checked the transcription data for accuracy and engaged in weekly discussions about the themes, and also analysed the data separately in the initial EPYS evaluation (which used top-down framework [impact, satisfaction and culture, and system] to organise inductive findings. Noting that the research reported here was a separate purely bottom-up inductive analysis); (2) Generate initial codes : the research group initially explored a sub-sample of data by making comments in the participants own words in Microsoft word document of the de-identified transcripts to develop a preliminary coding framework; (3) Search for themes : Open coding was conducted using NVivo 12 Software by one of the analysis team members); Review and define themes : the themes in the coding framework continued to be collaboratively refined and named through an iterative process of reading, coding, reflection and discussion in the weekly team meeting until all significant parts of the data had been considered and a codebook was collaboratively developed which included sub-themes and overarching themes. All interviews were subsequently double coded. The collaborative approach to analysis supported reflexivity as it encouraged comparisons and sharing of diverse perspectives the research group offered with their various backgrounds and lived experience– noting overall agreement within the team was high in this study; and, 6) Write-up : the results were written up and reviewed by all team members. A lay-summary of findings were returned to participants, however, there was no formal opportunity for participants to feedback on the findings and recommendations other than contacting the researchers directly.

Participant hospitalisation background

In total, 27 YP and 12 carers took part in the study. Two YP requested a carer be present who also participated in the interviews. Nearly all (11 of 12) carers were supporting a YP who was interviewed. Demographics of young people who participated in the study are presented in Table  1 .

All participants experienced an interaction with the public hospital system, via either voluntary or involuntary admission. Only two YP were additionally admitted to a private hospital facility. Two YP reported previously or currently accessing a clozapine clinic run out of the public hospital. The number of contacts with hospital varied, with over half of young people having multiple inpatient admissions, approximately a quarter having one admission only, and a small number presenting to the hospital Emergency Department without an overnight admission. Hospital admission length ranged from overnight to six months. Per standard practice [ 2 , 33 ], all participants had been assigned a care coordinator at their EIPS, and this individual generally had a clinical or allied health background (for example, nurse, social worker, or psychologist).

Overarching findings

EIPS intervention positively influenced participant hospitalisation experiences through the care coordinator’s formation of trusting relationships with the YP and family, explanation of why hospitalisation was needed, assistance navigating the system, and advocacy for relevant treatment tailored to the YP. Without this intervention, hospital and community care was perceived to be not only unhelpful but emotionally unsafe for YP and their families. Crises and unexpected events frequently occurred on the recovery journey, and participants highlighted the importance of high-quality, consistent relationships between their EIPS, themselves, and hospital care systems.

Four key EIPS care coordination themes were identified as influential in shaping participant’s hospital experiences and provide ideas to improve care: (1) A two-way street: EIPS affected how participants experienced hospitalisation, and vice versa; (2) It’s about people: the quality and continuity of relationships participants had with staff, in hospital and at their EIPS, was central to their experience; (3) A gradual feeling of agency: participants viewed EIPS as both reducing involuntary care and supporting their self-management; and (4) Care coordination as navigation for the healthcare system: great when it works; frustrating when it breaks down.

A two-way street: EIPS affected how participants experienced hospitalisation, and vice versa

The interplay between eips and early hospitalisation experiences.

Over half of YP entered an EIPS program after hospitalisation. A small number of YP described their first hospitalisation positively: a refuge providing a break from life stressors. These clients were already linked with an EIPS prior to hospitalisation, and had consented to their admission. For most YP their first hospitalisation experiences were without EIPS support, and they described these negatively. They predominately attributed this to the absence of adequate preparation for hospitalisation, intensifying feelings of confusion.

Over half of YP perceived they were ‘ in prison ’ (P4) during hospitalisations as they experienced lack of activity and stimulation, loss of freedom that was accompanied by surveillance by uniformed staff, confinement in locked spaces, and isolation from their networks and key supporters, with, they felt, little or no explanation. YP described feeling incarcerated for a crime they didn’t understand.

“Well, I think it’s really scary to be in a place where there’s all these uniforms and it creates kind of a sense of urgency (…) like you’re in prison and you’ve got prison guards kind of thing.” P4 .

Many carers described having struggled, prior to receiving EIPS support, to integrate dissonant views on hospitalisation; and experiencing tension between relief the YP was getting assistance and fear of potential negative effects. This included fear of rupturing family relationships by opposing YP’s wishes and supporting the admission. A few carers emphasised that they distrusted the approaches to care taking within the hospital setting, and were concerned the YP may learn new unhealthy behaviours or be traumatised by the approaches to care or by other unwell patients.

Many YP not linked with EIPS when presenting to hospital reported entering a high dependency unit (HDU). YP reported this had a considerable impact on them personally. Lower acuity units were preferred compared to HDUs, as admission to the latter was consistently reported to have led to exposure to violence, self-injury, lack of privacy, seclusion, and poor levels of staffing or lack of health care professional expertise. Participants described limited choice over where they (or, for carers, the YP they supported) ended up hospitalised without EIPS.

“[HDU unit] is mostly used for triage, especially because they are in an area with lots of ice addicts and potential for violence (…) There was a different tone to it. In the [HDU unit] they were trying to defuse people and send them on their way and at [lower acuity unit of first presentation] they were actually trying to help people.” P5

Positive hospital experiences were linked to recovery-focussed unit culture and peer connections. YP described valuing hospitalisation with other YP experiencing FEP to share experiences and realise they were not alone in their experience of psychosis. YP relayed that this functioned to reduce hopelessness, provide moments of fun, and develop a deeper understanding of their illness. In contrast, a smaller number of YP expressed a preference for limited engagement with others, as their level of perceived trauma increased when exposed to other’s mental health issues.

“I personally think that these spaces should not be traumatic, but they are. And unfortunately, I can’t say whether that’s because of the system, because of the kids themselves and their own issues. And it’s just like bouncing off this depressed person’s depression. This person’s got bipolar and schizophrenia and anorexia. And so, like you’re hearing all these stories” P26

Carers’ attitudes towards the hospital unit mirrored those of YP, with additional importance placed on family inclusivity and consultation, facilities being youth-friendly, and families’ being welcome at the unit.

The small number of YP who were not referred to an EIPS on discharge from hospitalisation spoke of the futility of the admission and the long-lasting impact of social withdrawal. The majority of these YP reported their mental health deteriorated rapidly over 1–2 months into acute relapse.

“There was no forward motion. I just felt stagnant. And that just made me feel like crap. And that just sent me down a spiral which led to psychotic depression, which got me back into a psych ward.” P5 .

For two YP, it took until their third admission (over a period of several months) to be referred to an EIPS. Engagement with EIPS broke their cycles of rapid re-admission. The issue for these two participants was a lack of appropriate referral to EIPS from the hospitals involved. One was ultimately referred to a state-funded service; one to a federally-funded service. One other YP reported securing an EIPS place via a family friend working in healthcare, rather than a professional care provider.

Reducing readmission to hospital through effective care coordination

Once linked with EIPS, over a third of YP described managing crises or early warning signs of relapse without hospitalisation . Avoidance of hospitalisation was in part attributed to the program and their care coordinator. Participants described this occurring through effective detection of early warning signs and adjusting medication, increasing frequency of care, modifying precipitating stressors, safety planning with the YP and carers to set up the home for acute illness management, and hospital staff deciding against admission due to a community option for assertive care. Being visited at home was preferred as it felt familiar and safer.

“It was kind of scary to go to a hospital because you don’t know what’s going to happen with you there. At least, at home I know I’ll be safe and not, I guess, overthinking too much and stressing out. I’m at home with people that I know, not at a hospital where nurses give you medication and whatnot, to calm you down and being around other unwell people and that.” P9

For a small number of acutely unwell YP, assertive treatment services (Mobile Assessment and Treatment (MAT) Team in federally-funded EIPS; and the Acute Care Service in state-funded EIPS) were needed, including home visits, until their mental health stabilised. This assertiveness was described as essential in managing the YP’s difficulty attending EIPS appointments during regular hours due to symptoms. One YP described how phone calls to check in were essential during a relapse, especially when symptoms of acute psychosis led to avoidance of services.

“At the time, it’s not too good because obviously I don’t want to be spoken to, but when they can get a hold of me and I can talk about it, it’s obviously life changing. The matter of me picking up the phone and talking about what’s wrong.” P27

In contrast, communication delays with EIPS during crises were identified by approximately a third of participants as leading to negative re-hospitalisation experiences. One carer reported attempting to call the MAT team in the federally-funded service, and not receiving a call back until the following day. They felt this had significant consequences for the YP, who by then had been admitted to hospital outside his LHD.

“If I had been able to get in contact with his MAT team, a psychiatrist might have been able to come out and say, take this, because the antipsychotics work pretty quickly (…) So I do wonder if we had had access to the MAT team at that point, that maybe that whole extra hospital stay wouldn’t have occurred.” P15

Longer engagement with an EIPS meant YP felt more empowered to articulate symptoms, express and negotiate preferences, and engage in treatment to avoid hospital. Some YP described discussions of the need for acute hospitalisation with their care coordinator as stimulating shifts in awareness and precipitating changes in their self-management skills.

“[EIPS] was ultimately saying, we don’t want you to go to the hospital. Our whole main aim is to prevent you from going to hospital and to prevent any early psychosis. So, they like embedded that into me. They were like, hospital is not a good thing. You don’t want to go to a hospital, you want to stay at [EIPS] and be able to manage your mental health.” P19

“I decided not to [attend hospital] because I thought maybe I can deal with that myself. Maybe I can try doing things myself, because at that time, I wasn’t putting in the strategies. It had only been when I’ve been using my strategies to deal with my psychosis that I had gotten better over a period of time.” P26

It’s about people: the quality and continuity of relationships participants had with staff, in hospital and at their EIPS, was central to their experience

Participants appreciated open, honest, and relaxed communication in EIPS staff, and care coordinators in particular held distinct value in their depth of YP knowledge as well as their location outside the hospital, which was perceived as a coercive system. YP highlighted the importance of trust building, working through ambivalence over treatment options, and processing the experience of hospitalisation.

Approximately half of YP described mental illness influencing their perception of hospital and EIPS staff and the meaning they attributed to hospitalisation. Many YP reflected on this experience in retrospect, acknowledging the influence of illness on formation of trust, interpretation of events experienced and engagement in their treatment. YP spoke of being acutely confused, developing paranoid beliefs about staff and other YP that may not have been grounded in reality, and experiencing fear due to stigma and social narratives of psychiatric hospitals.

“I tried to explain all my fantasies and all I was hearing and seeing. I had psychologists and psychiatrists and they were trying to challenge those thoughts, which is really hard to like kind of comprehend because at that time those thoughts were really strong. That’s probably another reason why I wasn’t as enthusiastic about going to (EIPS). So it’s like the nature of psychosis made it harder ” P19 .

This made long-term relationships built with consistent care providers in EIPS especially important in navigating the non-linear experience of recovery and working through ambivalence to facilitate engagement.

Over half the interviewed participants reported that staff inconsistency, low skill, and turnover could undermine the development of a therapeutic relationship and the critical role the care coordinator could play during a hospitalisation. Participants reported more access to senior permanent psychiatrists and lower care coordinator turnover in the state-funded EIPS (except in Darwin, where the federally-funded service is the only EIPS in the region, and where there are strong links between this EIPS and local health services).

“I feel like it depends on your case manager. I actually don’t think that my first case manager when I went to my first hospital admission focused on it well… So, it wasn’t as helpful. But my second and third admission, I had the same case manager. So, it was much easier for me to do the mental health plan. The techniques were thoroughly taught. So, it really depends on the case manager.” P19

One YP spoke of being involuntarily admitted in the middle of the night to an adult hospital because of unstable staffing arrangements in their federally-funded EIPS.

“I just felt like I was just one of those people that fell through the cracks sort of thing. I guess… well, like the lack of understanding and well now, because they’ve gone through some changes, and I’ve been through so many different people. I just felt like my case wasn’t really looked at properly.” P13

The processing of hospitalisation experiences involved understanding how the YP ended up in hospital, how to make sense of what happened to them and how to avoid re-admission.

“Well, the comparison to [first admission prior to EIP] I didn’t really walk out with an understanding. I just walked out with a lot more questions than answers and a lot more stress. While, when I came back here [after second admission], I could kind of like, ask ‘What happened? Why am I like this?’ I could actually get a response back, and a strategy back on how to prevent this, and how to talk better about this.” P14

Within the hospital, negative experiences of confusion, trauma, and coercion were frequently reduced when a trauma-informed approach to care, including authentic interest, empathy, consideration of preferences and flexibility, was provided. Authentic communication was described by many YP as listening deeply and treating the YP as a ‘ normal person, not sick.’ P25 Nurses and allied health were mentioned as facilitating these experiences of feeling understood, in contrast to frequently disconnected experiences with ward-based doctors.

“(Hospital doctors) are disengaged from us, like the nurses live with us in that situation (…) it’s the doctors who make the final call, but they’re the ones who know you the least ” P4 .

“So I feel like when I was there, it didn’t really get to the root of, you know, they didn’t seem too concerned about what was actually happening. And then like, I got frustrated with them because the psychiatrist that would come in and talk to me, she just annoyed me because she seemed like she knew everything without really talking to anyone.” P12

A third of YP perceived that a thorough understanding of their case did not appear to be a priority of the hospital. They described a lack of transparency in hospital processes, history taking without contextualisation of their presentation, and limited attempts to understand where the YP was “ coming from. ” P7 .

Feeling ignored led to YP feeling like they needed to “ play by the rules if I want to get out of here. ” P4 This feeling was coupled with YP minimising the impact of their symptoms and performing acts that they thought would be viewed by hospital staff as reflecting good functioning and being well.

“Because, you will feel confronted and instead of you opening up more, you will just, you know, cover yourself because people are not taking you seriously.” P7

Carers similarly identified that quality of relationships made a significant difference to the perception the YP was being cared for. Carers described being frustrated by a lack of communication and poor responsivity to requests, which led them to feel that their knowledge and understanding of the YP was being ignored.

“So, he was in hospital for two months and they contacted me three times, despite me trying to contact them. Well, I was in there every day, I would say, can you please call me so I know where to come for a meeting. They said, ‘we don’t need to see you’. Well, you do. I found their lack of communication staggering.” C8

Confidentiality limited disclosure of information by hospital staff and EIPS care coordinators. These limitations meant that one in three carers felt excluded from understanding the full story of their YP’s illness and progress.

“It was pretty hard and it has still been very hard. Because we only know bits and pieces. We don’t know the full issue.” C12

A gradual feeling of agency: participants viewed EIPS as both reducing involuntary care and supporting their self-management

YP perceived EIPS engagement impacted the use of involuntary care with no notable differences between state- or federally-funded EIPS. Approximately half of YP were admitted involuntarily for their first admission. Those who experienced further hospitalisations in the EIPS program were more likely to be voluntary for psychosis, and involuntary for overdoses and suicidal ideation. The small number of YP that continued to be admitted involuntarily for psychosis had a higher burden of residual psychotic symptoms and were less engaged and adherent with medications.

Being involuntary was described as aversive for YP due to the involvement of police and ambulance, use of force, coercion to take medication, leave and discharge being denied, a sense of intimidation during the tribunal experience, and the perception that there was no pathway to voice disagreement.

“Involuntary is horrible. That’s one of the bad things. The first two times in [acute unit] I had to go to tribunal. That was horrible. I don’t think that they should put people through that… It’s like being in a court case or something. And you’re a schizophrenic, thinking they can read my mind and it’s just horrible.” P24

Some voluntarily-admitted YP perceived a more covert coercion, feeling that their status would change to involuntary if they made choices that were not aligned with the treatment preferences of the hospital team.

“I stayed voluntarily. So, if I do anything, that’s against what they say to do, so if I choose to not take my medication, you know, it’s essentially you don’t have a choice because you came here voluntarily. So, we’ll switch you to involuntary, which means your stay’s indefinite.” P26

Some YP described a relationship between coercion and stage of illness and that coercion might diminish as the hospital staff became familiar with them and symptom reduction allowed for dialogue around decision making.

“It was very coercive, everything. So, when you’re sleeping, we’re going to give you the medication, open your mouth and things like that. You know, it was really, ‘wow, you don’t treat, you don’t treat anyone, anyone like this’, you know what I mean? So that really got a little bit under my skin. (…) But then later when they started trusting me more, they, they were, they started like listening to me and what I wanted to tell them about medications.” P7

A small number of YP reported feeling in control during a voluntary admission. They relayed feelings of choice and self-responsibility.

“Being voluntary, just a word, it just makes you feel more like you have more control over yourself. And in involuntary, it’s like jail. You just don’t know when you gonna leave. With voluntary at least, you know you have the power to fix yourself.” P24

In contrast to coercive hospitalisation experiences, over half of YP described noticing how the EIPS team considered their preferences and emphasised choice. A shift in focus towards self-management and self-responsibility was described by over two thirds of young people, with over a quarter describing it as being the most significant part of the EIPS program.

Care coordination as navigation for the healthcare system: great when it works; frustrating when it breaks down

Over half of participants reported EIPS advocacy in hospital was beneficial. This facilitated effective communication between them and the hospital, and positively impacted treatments or duration of stay. In contrast, around a third of YP attributed their increased confidence with re-admission to their own personal development (rather than care coordination), familiarity with the hospital, and a greater self-awareness of symptoms including what to say and what not to say to navigate the system to their advantage.

“This is my full fourth hospitalization. So I’m a lot more use to it, and the doctor goes to me, ‘You sound different this time.’ So I was talking all delusional. But I was just keeping it to myself and just talking normally. So even though I went back to hospital, I was like, ‘Oh, well, I know I’ll get back on my feet’, whereas the first hospitalization, I thought the whole world was disappearing.” P24

Facilitation of planned and unplanned hospitalisation

For approximately a quarter of participants, negative attitudes to hospital shifted when hospitalisation was planned and used purposefully. EIPS aided this process through appropriate hospital choice, and when admissions were utilised to safely manage medication changes. These participants were markedly more likely to also describe the benefits of co-location of an EIPS and hospital within the same LHD, with a shared clinical records system and a clear relationship between the hospital, acute care service and their EIPS.

“So they have good communication with the EIPS team because you know, it’s literally 200 metre walk from one place to another. It’s not hard to communicate with the other place. They had constant communication, so I think it was very beneficial to both parties to be able to, you know, head back and forth like, you know, what they think that [name] should be doing, and whether or not she should be leaving, I think it gave both parties confidence as well.” C2

One hospital in NSW was described consistently as having a strong relationship with a federally-funded EIPS. This improved the relevance of intervention offered, integrated points of care, and improved handover of information to prevent repetition.

When the EIPS was in a different LHD than the admitting hospital, communication broke down with care coordinators not being informed of admission. The persistence of care coordinators in advocating for shared discussions was valued.

“One day, [case manager] actually insisted that we’ll have a meeting together. And we were in the meeting and she was asking questions. And if it wasn’t for her, I don’t believe we would have gotten anywhere.” C8

For most participants, when the care coordinator was unable to take an active role in the admission this had negative consequences for YP’s experiences. One YP spoke of the difficulties of not being visited by her care coordinator during her hospitalisation where she was physically assaulted. She felt communication would have informed the hospital of her vulnerabilities and advocated for better management of unit dynamics, which she was too afraid to discuss with hospital staff.

“I think it would have been really reaffirming like ‘I’m still here for you’. You know, like ‘You’re still my client, I’m still going to help you. And at the end of the day, this is for you to help you’” P26

A few YP spoke of the negative effects of being prescribed medications without EIPS consultation resulting in significant side effects. A few young people raised how lack of understanding of their case could have been avoided if EIPS were leading the admission process.

“If (EIPS) had their own mental ward, I would admit myself into that and it’d be sweet.” P27

A small number of young males reported not wanting care coordinator collaboration in hospital. These YP presented either with a higher symptom burden or a desire for control of information and choice over EIPS involvement. They declined to let the EIPS team know when they were being admitted, perceiving the team would have had no impact on the admission process and their care.

Length of hospitalisation

Over half of participants perceived being part of an EIPS program influenced length of hospitalisation through collaboration of the care coordinator and the hospital. When the YP had only recently entered the program prior to first hospitalisation this effect on length of hospitalisation was lost.

“Not necessarily, just because of how close to the end of the bridge I was when I first came into [EIPS] I feel like if I knew how to actually get in contact and make an arrangement sooner, I could have avoided hospital altogether.” P12

Approximately a quarter of YP commented there appeared to be no connection between being part of the program and the length of their hospitalisation. This was linked to admissions with a clear demarcation of roles between the EIPS and hospital, with decision-making responsibility lying solely with the hospital psychiatrist.

Conversely, a few participants commented the advocacy of their care coordinator lengthened hospital stay appropriately to address unresolved psychotic symptoms and allow time to address psychosocial factors.

Principal findings

This is the first Australian qualitative study to explore YP and their carers’ hospitalisation experiences both prior to and during engagement with EIPS. Inclusion of YP at different illness stages and time in an EIPS aids understanding of how experiences contrast at different stages of recovery and engagement. Participants consistently described EIPS and hospital as contrasting experiences of relationships, coercion, and transparency. Many participants noted hospital communication could be improved, with some participants describing formative moments of care and connection with specific hospital staff members. This mirrors research demonstrating compassionate relationships modify negative experiences of inpatient loss of autonomy [ 34 ]. These findings point to a need for integrating structures of support to provide a sense of safety to YP and their families in navigating hospital systems.

The impact of health service design

The importance of coordination between EIPS, the associated acute after-hours service, and the local hospital was highlighted. Being an EIPS client was not sufficient to avoid hospitalisation, but service and funding structures could support an integrated approach to care, with significant effects on YP outcomes. Service co-location, shared information systems and inter-service case conferences were valued because a care coordinator working for an EIPS within the same information system as the hospital could offer relevant context to support tailoring interventions in a meaningful way. They clarify processes and rationales for approaches to care, and support a transfer of trust and knowledge. Additionally, YP and their carers indicated EIPS shaped their perceptions of hospital admission overall, by minimising urgent, unexpected admissions on the one hand and facilitating (and increasing the perceived utility) of essential admissions on the other. They criticised what they perceived to be hospital structures that placed decision-making power in the hands of psychiatrists with whom they had no previous relationship from which to build trust or familiarity.

Internationally, embedding of EIPS services within healthcare systems has faced difficulties, with lack of collaboration between clinical infrastructures, access inequality, and service incapacity due to insecure staffing [ 35 ]. Study participants at federally-funded EIPS experienced greater difficulties with staff continuity than state-funded services, which clearly needs to be addressed.

In line with past research [ 36 ], participants generally preferred home-based treatment. Alternative models to inpatient treatment offer less restrictive care and choice, key themes identified as important. Reviews of alternative acute care models in the UK highlight the complexity of diversity in services, as the benefits of increased choice need to be weighed against loss of continuity and confusing system pathways [ 37 ]. Our study illustrates the importance of improving continuity and coordination between EIPS and acute care services and hospitals, and for the federally-funded teams to develop improved relationships with the public health system.

Hospitalisation punctuates FEP and the recovery process, forming a critical juncture where hospital care impacts YP pathways in illness management and personal transitions including the integration of illness into identity. An active and collaborative care coordinator was portrayed as the thread that connected different crises and hospital experiences, creating a line of connection that enabled participants to feel supported. The intensity, length and subsequent trauma of hospitalisation experiences were reduced by preparation done with participants, liaison with hospital teams and processing post-hospitalisation. Practical interventions included calling ambulances, informing family, providing handover to hospitals, and supervising leave. Holistic interventions included promoting reflection on symptoms, beliefs, and perceptions to process and make meaning, increasing the usefulness of a hospitalisation event. Processing hospitalisation and self-management interventions were described as profound by many participants at a later stage of recovery, compared to those in early recovery where practical supports were most valued. The importance of post hospital support has been detailed in our linked paper focussing on service transitions, which found intensified follow-along support from EIPS was critical with a need for consistent, coordinated discharge planning with carer and YP involvement.5 The work of carers and care coordinators has been reported in a meta-synthesis as essential in integrating hospitalisation into larger narratives of recovery and self-management by restoring a sense of control and agency [ 24 ]. Our study supports previous findings from FEP engagement literature that time, stage of illness, and individual experience of recovery influence the care coordinator/YP relationship [ 38 ]. Previous authors have described the importance of relationships as a dynamic bidirectional process [ 20 ]. In our study, the presence or absence of a consistent care coordinator who had been able to build this relationship with their client, as well as the individual characteristics of YP and their carers, combined to create quite varied hospitalisation experiences across our participant group.

Impact of family systems

This study was unique in integrating hospitalisation experiences of both YP and their carers. Previous research has highlighted interactions between the initial carer-YP relationship, carer appraisal of YP illness and behaviour, carer experiences with services and subsequent carer behaviour towards the YP [ 16 , 39 ]. Many YP and carer narratives converged in raising similar themes with key differences in perspective due to their distinct vantage points being accommodated within or outside the hospital system. A few YP and carer perspectives diverged which was linked to the nature of their relationship and differing perceptions of illness. Carers spoke of EIPS advocacy needed to obtain information in hospital. The care coordinator was pivotal in contextualising the illness, providing education on the purpose of hospital, and assisting with modification of negative carer attitudes linked to social stigma and cultural beliefs. There was a continuum of carer involvement in YP recovery processes, and this influenced the extent to which the carer or the care coordinator took the lead in driving collaboration in hospital. In cases where YP restricted the flow of information to their carer for confidentiality, the care coordinator played a critical role in managing YP and carer experiences. The federally funded EPYS addressed family dynamics influencing YP hospitalisation experiences through service family therapy interventions and family peer support recognising reciprocal interactions between family relationships and stress and carer burnout and YP disengagement. Family interventions in FEP is supported in the literature with evidence carers can reduce rates of relapse and hospitalisation [ 40 ] and facilitate acceptance of illness and treatment [ 21 ]. Participant experiences mirrored findings in the literature of the importance of information sharing, carer involvement in care planning and discharge and valuing carer knowledge [ 41 ]. Our findings suggest greater integration of family support into hospitals is needed. This is supported in the literature which shows the need to include family support as core business for inpatient staff and for early contact and partnership in decision making [ 42 ].

Reducing coercive practices and promoting trauma-informed care

Unsupported admissions (i.e., those without a care coordinator) were frequently traumatic for YP. This finding resonates with prior research where the absence of information about what to expect in hospital and what was happening during admission intensified fear and confusion [ 11 ]. Our findings suggest that, where possible, engaging participants prior to escalation provided greater opportunity for mitigating potential for trauma from hospitalisation. Tailoring care to the context of the YP and family, and preserving their agency within decision-making by offering an option for treatment within the home environment, created a sense of safety [ 43 ]. Similarly, the formation of long term relationships with care coordinators privileging self-management and personal recovery goals diminished participant powerlessness over the hospitalisation process. This approach aligns with a Trauma-Informed Care (TIC) perspective, which appreciates the importance of recognising and addressing powerlessness of YP and families and offering real choices in the context of inpatient psychiatric care and involuntary care legislation. Reducing iatrogenic trauma has the potential to modify the recovery course, due to the dynamic interplay between traumatic stress and psychosis. YP valued receiving assistance to process hospital related trauma at their own pace by their EIPS care coordinator, mirroring prior research [ 44 , 45 ].

Participant reflections highlight the complexity of involuntary treatment. YP reported ambivalent emotions over hospitalisation experiences, with some YP recognising the relationship between experiencing hospitalisation as frightening or prison-like and the impact of FEP on self-awareness and their decision making, acknowledging why involuntary interventions had been used in the context of psychosis. A review of randomized studies revealed that increasing shared decision making and hospital staff training in least restrictive practice reduced coercive treatment [ 46 ]. The potential use of advanced statements in FEP has been explored in a qualitative study which identified the benefit of the tool in empowerment, prompting discussion of client preferences, and communication of YP information to optimise treatment [ 47 ]. Use of this instrument could modify the impact of involuntary treatment by providing a plan for treatment previously consented to by the YP improving the relevance and acceptability of treatments offered in hospital. The statement could potentially modify the risk of traumatic experiences by detailing the YP’s trauma triggers and personal preferences for care.

Strengths and limitations

Key strengths of this study include that we were able to capture the perspectives of a large and diverse group of YP and their carers, across multiple service locations, due to a purposive sampling strategy that was largely successful. As it was part of a larger evaluation, we were not able to assess data saturation and we relied on a priori estimates of an appropriate sample size based on literature guidance [ 48 , 49 ]. General limitations included recruitment through EIPS clinician nomination increasing the possibility of gatekeeper bias, sole reliance on participant recollection, and limitation to the Australian, chiefly urban, context.

Specific limitations include not exploring the influence of culture, ethnicity, or socioeconomic structural adversity on participant hospitalisation experiences. Further research into the intersection of these factors with EIPS support is required as Australian born migrants with FEP have longer admissions and high rates of involuntary care [ 50 ].

Although our study highlighted the importance of earlier engagement and improving accessibility of EIPS, further research is needed into what subgroups of YP presenting with FEP are more likely to be hospitalised. The drivers of hospitalisation are complex, and previous research highlights the importance of addressing clinical and system factors. It is possible those linked with EIPS prior to hospitalisation represent a subgroup with specific clinical and socioeconomic characteristics.

The positive impact of EIPS on hospitalisation was frequently associated with a trusting relationship with a consistent care coordinator, who demonstrated expertise in tailoring an approach to care through early engagement with the YP when experiencing increasing psychosis symptoms, a non-coercive practice approach, and partnership with hospital care providers. Discontinuity in EIPS staff and lack of integration with hospital systems undermined the care coordinator’s role in hospitalisation. Information provision and developing YP recovery growth appeared to increase participant confidence in hospitalisation processes. Family work with carers was valued. Care coordinator involvement as partners in inpatient treatment decisions may improve the usefulness and meaningfulness of hospitalisations.

Data availability

Due to the conditions outlined in the study’s consent process, full transcripts cannot be shared to protect participant anonymity. However, amalgamated datasets generated and/or analysed during the current study are available from the corresponding author on reasonable request.

Abbreviations

Early Intervention Psychosis Services

Early Psychosis Youth Service

First episode of psychosis

Ultra-high risk

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Acknowledgements

The authors would like to thank the young people, families and clinicians who supported this project from headspace, Sydney Local Health District, Western Sydney Local Health District, the Nepean Blue Mountains Local Health District, and the evaluation partners. Thank you to Christiane Klinner, Margaret Yeung and Anthony Chan for their support on the research.

This research was part of the Early Psychosis Youth Services (EPYS) Evaluation project. This was an independent evaluation of headspace early intervention psychosis services, which commissioned by the Federal Government with partners EY (Pty Ltd), the University of Sydney, and The George Institute for Global Health. The preparation of this manuscript was supported partially by the Australian Government through the Australian Research Council’s Centre of Excellence for Children and Families over the Life Course (Project ID CE200100025), and the Medical Research Future Fund Clinician Researchers Applied Research in Health (Project ID: MRF2032279).

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Tacita Powell

Sydney School of Medicine (Central Clinical School), Faculty of Medicine and Health, University of Sydney, 94 Mallett Street, Camperdown, NSW, 2050, Australia

Nicholas Glozier, Katrina Conn & Alyssa Milton

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Nicholas Glozier & Alyssa Milton

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Katrina Conn

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Rochelle Einboden

Children’s Hospital of Eastern Ontario (CHEO) & CHEO Research Institute, Ottawa, Canada

Susan Wakil School of Nursing and Midwifery, Faculty of Medicine and Health, University of Sydney, Camperdown, Australia

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School of Nursing and Midwifery, Monash University, Melbourne, Australia

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NG, AM, NB and RE conceived the study and its design. AM and TP conducted and supervised data collection. AM, TP and KC analysed the data. AM, TC and PC drafted the manuscript. All authors were involved in revising the manuscript and all read and approved the final manuscript.

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The study received ethical approval ( Protocol No. X17-0398 & HREC/17/RPAH/596) , which was granted on 9 April 2018 by the Ethics Review Committee at the Royal Prince Alfred Hospital, Sydney Local Health District (SLHD). All participants provided written informed consent. The authors assert that all procedures contributing to this work comply with the ethical standards of the relevant national and institutional committees on human experimentation and with the Helsinki Declaration of 1975, as revised in 2008. Informed consent was obtained from all study participants. Additional parental/guardian consent was obtained for participants aged 12–18 years (noting the requirement for parental/guardian consent for 16–18 year olds was subject to clinician advice and state specific laws).

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The authors declare no competing interests.

AM (BSc, PGDip Psych, MAppSc Health Psych, PhD): is a psychologist and research fellow with Australian and international experience working with EIPS and adult mental health services. TP (BSc, MBBS, M Psychiatry, M Clinical Family Therapy) is a child and adolescent psychiatrist with experience working in child, youth (EIPS) and adult mental health services. KC (BSc, Bed) is a teacher and lived experience researcher with a lived experience of using EIPS. RE (BScN, MN, PhD) is a nurse and qualitative researcher specializing in critical social theory. NB BN, MScN, PhD) is a mental health nurse and professor in qualitative research and qualitative research methodology, with a focus on critical health research, ethnographic theories and methods. PC is a medical student. NG (MA, MBBS, MSc, MRCPsych, FRANZCP, PhD) is a consultant psychiatrist specialising in epidemiology, trials and health services research.

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Powell, T., Glozier, N., Conn, K. et al. The impact of early intervention psychosis services on hospitalisation experiences: a qualitative study with young people and their carers. BMC Psychiatry 24 , 350 (2024). https://doi.org/10.1186/s12888-024-05758-4

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DOI : https://doi.org/10.1186/s12888-024-05758-4

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Sex and gender differences in symptoms of early psychosis: a systematic review and meta-analysis

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First-episode psychosis (FEP) can be quite variable in clinical presentation, and both sex and gender may account for some of this variability. Prior literature on sex or gender differences in symptoms of psychosis have been inconclusive, and a comprehensive summary of evidence on the early course of illness is lacking. The objective of this study was to conduct a systematic review and meta-analysis of the literature to summarize prior evidence on the sex and gender differences in the symptoms of early psychosis. We conducted an electronic database search (MEDLINE, Scopus, PsycINFO, and CINAHL) from 1990 to present to identify quantitative studies focused on sex or gender differences in the symptoms of early psychosis. We used random effects models to compute pooled standardized mean differences (SMD) and risk ratios (RR), with 95% confidence intervals (CI), for a range of symptoms. Thirty-five studies met the inclusion criteria for the systematic review, and 30 studies were included in the meta-analysis. All studies examined sex differences. Men experienced more severe negative symptoms (SMD =  − 0.15, 95%CI =  − 0.21, − 0.09), whereas women experienced more severe depressive symptoms (SMD = 0.21, 95%CI = 0.14, 0.27) and had higher functioning (SMD = 0.16, 95%CI = 0.10, 0.23). Women also had a lower prevalence of substance use issues (RR = 0.65, 95%CI = 0.61, 0.69). Symptoms of early psychosis varied between men and women; however, we were limited in our ability to differentiate between biological sex and gender factors. These findings may help to inform early detection and intervention efforts to better account for sex and gender differences in early psychosis presentation.

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Acknowledgements

Kelly Anderson is supported by a Canada Research Chair in Public Mental Health Research.

This work was funded by an Early Researcher Award from the Ontario Ministry of Research, Innovation, and Science, and by a Project Grant from the Canadian Institutes of Health Research (PJT 153022).

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Carter, B., Wootten, J., Archie, S. et al. Sex and gender differences in symptoms of early psychosis: a systematic review and meta-analysis. Arch Womens Ment Health 25 , 679–691 (2022). https://doi.org/10.1007/s00737-022-01247-3

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Borderline personality disorder and early psychosis: a narrative review

• Arianna Biancalani 1 ,
• Lorenzo Pelizza 1 &
• Marco Menchetti 1  

Annals of General Psychiatry volume  22 , Article number:  44 ( 2023 ) Cite this article

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The purpose of the present review was to summarize the main literature contribution on the relationship between borderline personality disorder (BPD) and early psychosis. While retracing the historical path of the term “borderline”, specific attention was paid to psychotic and psychotic-like symptoms in BPD. Its relationship with At Risk Mental State was evaluated, as well.

This search was conducted on PUBMED/MEDLINE and PsycInfo, looking for “Borderline personality disorder, First Episode Psychosis, Early Psychosis, Ultra-High Risk AND/OR Clinical High Risk” for psychosis.

Eight pertinent papers were identified on this topic. Their main findings were then discussed. The term “borderline” has undergone different changes in meaning and use, despite always referring to states considered on the fence between neurosis and psychosis. However, considering the history of psychopathology and its relationship with diagnostic manuals, little attention has been given to its psychotic features. Being those symptoms highly burdensome, this neglect has often led to misdiagnosis and under-treatment.

Conclusions

Psychotic symptoms in BPD can be severe and distressing. Nonetheless they can be easily neglected, and when found they challenge clinicians in defining a differential diagnosis to distinguish between BPD and Psychosis Spectrum Disorders. Given specific needs and interventions for these different conditions, a dimensional, rather than categorical, approach should be considered, as well as specific care pathways and monitoring should be advised.

History of the concept of “Borderline” disorder

For over a century, since it was first used as a psychoanalytic concept by Stern in 1938 [ 1 ], the term “ borderline ” has experienced a continuous change in use and understanding. In this respect, Stern originally used the word to describe a cluster of patients who were not likely to respond well to psychoanalytic therapy and that he believed was somehow different both from schizophrenia and neuroses [ 2 ]. In 1952, Knight [ 3 ] was the first to define a “borderline state”, which was conceptually very close to schizophrenia, but also had neurotic features and identified a temporary “ego state” that the patients could enter and exit, thus being affected only for a given time. This idea interestingly resembles a previous one by Zilboorg [ 4 ], a psychoanalyst who at first described patients with “ambulatory schizophrenia”, in which it was reported one of the two main roots of the “borderline” concept: i.e., its psychotic features (shared with schizophrenic disorders).

It was in 1967, then, that the term predominantly ceased to identify a mild form of schizophrenia, when Kernberg [ 5 ] borrowed it to describe one of the possible levels of personality organizations (namely, “psychotic”, “neurotic” and “borderline”). Quite differently from what Stern had stated, Kernberg used it to qualify a disorder not likely to change during time and closer to our understanding, as well [ 6 ].

In the first edition of “A Glossary of Psychoanalytic terms and Concepts” [ 7 ], Moore and Fine defined “borderline” as “a descriptive term referring to a group of conditions which manifest both neurotic and psychotic phenomena without fitting unequivocally into either diagnostic category”. It is probably because of this indefiniteness that, despite the many attempts to classify it, it has always remained vague and hardly harmonized in the psychiatric field.

After a long journey through different schools of thought, where a “Borderline Syndrome” [ 8 ] and a “Borderline Disorder” [ 9 ] were described, in 1979 Spitzer and Endicott theorized the belonging of the “borderline patient” (as it was commonly perceived) either to a Schizotypal Personality Disorder or to an Unstable Personality Disorder [ 10 ]. Indeed, even if the term “borderline” had been misused for decades, there was no official description in any previous diagnostic manual. These two terms referred to the two main uses of the word “borderline”, identifying, on one hand, a group of patients more closely related to schizophrenia, and a group of patients predominantly characterized by “unstable affect, interpersonal relationships, job functioning, and sense of identity” [ 11 ]. Later, the task force who worked at the third edition of the Diagnostic and Statistical Manual of mental disorders (DSM-III), replaced the term “unstable personality disorder” with “borderline personality disorder”, which was clinically much more usual and wasn’t subject to misinterpretation on the actual stability of personality disorders. Despite Spitzer and Endicott [ 10 ] remarked how not mutually exclusive the two diagnoses were, but dimensionally likely to be integrated, psychotic-like features formally ceased to be associated with Borderline Personality Disorder (BPD) (for a brief summary of the history of BPD concept, see Table 1 ) [ 12 , 13 , 14 , 15 ].

Defining psychotic symptoms in BPD

According to the fifth edition of the Diagnostic and Statistical Manual of mental disorders (DSM-5), BPD is described by nine different criteria [ 16 ]. Notably, the ninth point mentions “transient, stress-related paranoid ideation or severe dissociative symptoms”, which somehow recalls the historical ambivalence of BPD psychopathology, considered on the fence between psychotic and neurotic symptoms [ 17 ]. However, psychotic features have not always been this relevant. It was only in 1994, when the DSM-IV was published, that BPD was acknowledged again a reference to potential psychotic experiences, after being strictly set apart from the schizotypal personality disorder in DSM-III [ 18 ].

For the first time in the history of The International Classification of Diseases and Related Health Problems, the 11 th revision (ICD-11) includes a description of psychotic-like symptoms “in situations of high affective arousal”, when identifying a borderline pattern for personality disorders [ 19 ].

Even if what should or should not be included in the description of BPD could seem only a theoretical issue, it is evident how the accuracy of definitions and criteria can affect the quality of diagnosis [ 20 ]. Also, even if the debate around the appropriateness of considering psychotic aspects a core diagnostic feature is still open, it is unarguable that these symptoms can be serious for patients who experience them [ 21 ]. What is needed, then, is an effective effort to address patients’ needs and to improve specific treatments, accordingly.

Evaluating the burden: the data so far

Psychotic symptoms in BPD are often underrated and considered temporary or mainly associated with stress [ 17 ]. Yet, going deeper into the study of their phenomenology and comparing them to the “proper” psychotic features of schizophrenia, similarities and differences depict a very specific pattern of characteristics.

On one hand, psychotic symptoms in BPD seem to be phenomenologically very similar to those experienced by patients with psychosis spectrum disorders [ 17 , 22 ]. As a direct consequence, differential diagnosis can be a challenge, thus leading to potential fluctuations in diagnosis and to mistreatment [ 23 ]. Also, despite the usual underestimation of psychotic experience in BPD, these symptoms can cause an extremely high burden. Among the most distressing psychotic symptoms in BPD, auditory verbal hallucinations (AVH) play a central role [ 21 ] and up to 50% of patients report them [ 24 ]. Indeed, some of the most worrying data suggest that AVH in BPD are associated with increased suicidal ideation, suicide attempts and hospitalizations [ 18 , 22 , 25 ]. If compared to those in schizophrenia, AVH in BPD have not been found to differ in frequency, duration, location, loudness, or conviction [ 17 ]. Coherently, misdiagnosis mostly happens when AVH differ from the common understanding of the diagnostic manuals and either meet criteria for “First Rank Symptoms” (FRS), and are perceived as coming from outside the head or when of lasting duration [ 20 ].

On the other hand, psychotic symptoms differ in some ways between BPD and Psychosis Spectrum Disorders. First, delusions, conceptual disorganization and negative symptoms seem not to be as common as in schizophrenia [ 17 ]. When describing AVH, patients with BPD refer a greater distress and negativity in content, yet they seem to be able to manage them better than patients with schizophrenia can, where commentary voices are also more frequent [ 17 ]. Given that AVH usually appear earlier in BPD (mean age at onset = 16 years) [ 22 ] and that these patients show better resistance, early diagnosis becomes fundamental in preventing the worsening of the symptoms and in aiming at the best possible quality of life.

Interestingly, a recent study [ 22 ] compared psychotic symptoms in adolescents with a full-criteria diagnosis of BPD to those experienced by subthreshold BPD patients. The main differences, concerning psychotic symptoms, psychoticism and occupancy, were observed between the full-threshold group and the subthreshold group. Despite the awareness that psychotic symptoms are always a risk factor for worse functioning, regardless of the diagnosis, this finding suggests that a diagnosis of BPD should be a hint for careful management and monitoring.

After defining the significance of psychotic symptoms in BPD, questions around treatment and management arise. There are many reasons why there is a high need for studies to assess the benefit of psychotherapy and antipsychotics in these specific cases [ 22 ]. One of the most relevant is the understanding that neurocognitive impairment is known to be greater in BPD with psychotic features [ 26 ]. One of the hypotheses is that such impairment can compromise mentalization, which consequently makes social cognition weaker and psychotic symptoms (starting with paranoid phenomena) more likely to arise. The use of antipsychotic drugs, which a recent review [ 27 ] reported to be effective in these patients, should also be furtherly discussed. As analyzed in a review by Beatson [ 20 ], the most studied antipsychotics for AVH in BPD are olanzapine (2.5–10 mg daily), aripiprazole (2.5–10 mg daily) and quetiapine (50–150 mg daily). Additional results about the efficacy of aripiprazole compared to placebo on AVH in young patients (aged 15 to 25 years old) are awaited soon, since a RCT on the topic is on its way to be published [ 28 ].

BPD in at-risk mental states and first-episode psychoses

Given the challenge of differentiating BPD with psychotic features from psychosis spectrum disorders, it is evident that this becomes even more difficult when subtle, subthreshold psychotic symptoms are involved (Table 2 ). Indeed, since transient psychotic symptoms can be present in both BPD and early psychosis, there is a significant overlap between “At-Risk Mental States” (ARMS) and BPD spectrum psychopathology with attenuated psychotic features at presentation [ 23 ].

Starting from this background, the aim of this narrative review was to examine the main findings on BDP in patients with early psychosis reported in the literature to date.

Methodology

The search was conducted on MEDLINE/PubMed and psycInfo, looking for “Borderline personality disorder, First Episode Psychosis, Early Psychosis, Ultra-High Risk AND/OR Clinical High Risk” for psychosis. We specifically analyzed papers written in English and published by May 31, 2023. We found 8 pertinent papers on this topic. Their main findings were reported and discussed (see Table 2 for details) [ 29 , 30 , 31 , 32 , 33 , 34 ].

Clinical similarity on such psychotic features can be possibly explained going deeper into the study of psychopathology. According to a study by Zandersen and Parnas [ 35 ], most patients with BPD (considering different stages of illness) meet criteria for a schizophrenia spectrum disorder (which includes Schizotypal Personality Disorder). This observation gives space to different thoughts. First, as it is known from a historical perspective, the choice to differentiate BPD from SPD has long been debated, since many patients often meet both criteria. All things considered, it is logical to assume that BPD as a concept ends up being over-inclusive [ 36 ]. This comes as a direct consequence of a methodological shift, which comprises the use of an atheoretical diagnostic manual, based on behaviors rather than personality structure and prototypes [ 35 ]. In addition, time should be taken to reflect upon the psychopathological concept of BPD and consider a step “back” to a theoretical understanding of the disorder, which was originally very close to schizophrenia. Specifically, there are some key BPD features, like “identity disturbance” and “feeling of emptiness”, which might resemble other symptoms, nonetheless belonging to the Schizophrenia Spectrum Disorders [ 35 ], like the so-called “disorders of the self”. Given the similarity, it would be helpful to build back awareness around the meaning DSM criteria have on a “narrative level” [ 35 ] and how deeply these concepts can be explored on a “core” psychopathological level. Differential diagnosis would then be easier. Also, this would allow the acknowledgment of those highly severe cases of BPD, who share a common psychopathological ground with schizophrenia. Interestingly, some effort has been made to determine whether different subgroups of BPD could explain its heterogeneity. Smits and co-workers [ 37 ], for instance, identified three clusters of BPD patients sharing common characteristics. Among these, a schizotypal/paranoid type was described as very close to SPD, with introjective and psychotic-like features, which inevitably posed questions around its risk for psychosis. This subgroup was not as represented as the Core BPD and the Extravert/Externalizing subtypes in the study, yet seemed to be more likely to present late at mental health services, thus being more vulnerable to negative outcomes.

So far, when examining ARMS, no predictive meaning towards transition to psychosis has been found in those patients who presented BPD symptoms [ 33 ]. Nonetheless, the severity of BPD psychopathology hasn’t been associated either with clinical higher or lower risk for psychosis, thus suggesting how every patient with BPD having attenuated psychotic symptoms and/or meeting cognitive-perceptive basic symptoms criteria (i.e., COGDIS and COPER) should be monitored, regardless of the scores [ 31 , 33 ] (see also Table 2 , for details on main empirical findings about BPD psychopathology in early psychosis). Then, this is even more important, since it is known that, while keeping in mind that not all people with BPD need to be screened for psychosis, their co-occurrence results in a worse functioning and response to treatment [ 38 ]. Indeed, a possibility of co-occurring diagnoses of BPD and schizophrenia spectrum disorder may also occur. In this respect, Bahorik and Eack [ 38 ] reported that at 1-year follow-up, patients with schizophrenia and comorbid BPD showed significantly less improvement in psychiatric symptomatology (particularly hostility and suspiciousness), as well as global functioning, and were re-hospitalized at significantly higher rates than individuals without BPD. The authors suggested that the co-occurrence of schizophrenia and BPD was not infrequent and that BPD had a significant negative longitudinal impact on the course and outcome of subjects with schizophrenia.

When it comes to analyzing the impact of BPD on First Episode Psychosis (FEP), recent findings suggest how the overlap of the two disorders can lead to an increased risk for depression and self-harm [ 34 ]. Surprisingly, despite a higher severity, this combination is not associated with a major number of hospitalizations. One possible explanation is that patients with BPD may undergo a substantial under-treatment, probably due to a common underestimation of their symptoms.

Considering that, according to Francey and colleagues [ 32 ], the subgroup of patients presenting with FEP and BPD can represent up to a quarter of the total cases of FEP, specific attention should be paid to the treatment. The same study reports how this cluster of patients is more likely to receive a lower dosage of antipsychotics. This finding underlies how specific guidelines would be helpful in avoiding a stigmatizing approach and consequent mistreatment.

BPD psychopathology can be found in patients presenting with early psychosis. Also, psychotic, or psychotic-like symptoms can be the main features already at the first contact of BPD patients with mental healthcare services. These statements lead to two main clinical considerations. First, personality structure and pathology should be explored in people presenting with early psychosis, since it is known personality disorders can hide specific needs and affect the response to treatment. This may also require developing new clinical guidelines and effective treatments for young patients with early psychosis and co-occurring BPD that take into account “premorbid” and interpersonal aspects of their presenting problems. Secondly, special attention should be paid to BPD patients who carry a high burden of disease, with intense psychological suffering and bad functioning. Indeed, the severity of symptoms and functional impairment should alert mental healthcare professionals and lead to a further investigation of basic symptoms and potential psychotic psychopathology (either attenuated or full-blown). In this respect, psychotic symptoms can be viewed as “trans-diagnostic phenomena” [ 39 ], with psychotic experiences in schizophrenia spectrum disorders and BPD sharing similarities, which raises the question of whether they are underlain by the same neural mechanism [ 40 ] and have common risk factors (such as previous traumatic events, family history of psychotic disorder, substance misuse) [ 41 ]. Taking this into account, theoretical questions around how BPD should be defined and perceived inevitably arise. Should BPD meeting psychotic symptoms or ARMS criteria be considered more severe and worthy a personalized approach? If so, should psychotic experiences be reconsidered as core diagnostic criteria? Since definitions do not always meet the reality of everyday clinical practice, what, anyhow, should be achieved is the understanding of the high suffering this kind of patients can go through. Moreover, the evidence that BPD patients with psychotic signs are often at higher risk of developing a wider range of negative outcomes (including suicidal thinking and behavior) cannot be ignored, especially when considering treatment and monitoring.

In conclusion, sometimes understanding this specific vulnerability requires mental health professionals to go beyond narrow diagnostic categories and embrace what is known as a “dimensional approach” to psychopathology and psychiatric disorders. Future studies on early psychosis and BPD should thus recognize both the dimensional and dynamic nature of psychopathological symptoms and evolving phenotypes across the transition from childhood to adulthood by adopting a clinical staging approach [ 42 ]. Such an approach needs to include the measurement of personality pathology, in order to focus on the etiological factors and treatment options for psychotic symptoms in BPD. Also, taking into account a “network approach to psychopathology” [ 43 , 44 ], common risk factors, such as trauma and substance abuse, could be considered as possibly interacting with each other, thus concurring to overlapping psychopathological categories. This could be the first step in the complex path to better understand the relationship between psychosis spectrum disorders and psychotic experiences being found in severe personality disorders.

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Biancalani, A., Pelizza, L. & Menchetti, M. Borderline personality disorder and early psychosis: a narrative review. Ann Gen Psychiatry 22 , 44 (2023). https://doi.org/10.1186/s12991-023-00475-w

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• Borderline personality disorder
• First episode psychosis
• Schizophrenia spectrum disorder
• Early psychosis
• Early intervention
• Early detection
• Psychopathology

Annals of General Psychiatry

ISSN: 1744-859X

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• Introduction
• Conclusions
• Article Information

The latent class growth analyses detected the best model fit for 4 classes. Class 1 represents individuals with persistent shorter sleep duration across time points, which was the main focus of this study. Class 2 refers to individuals with persistent intermediate-shorter sleep duration. Class 3 represents individuals with persistent intermediate-longer sleep duration. Class 4 reflects those individuals with persistent longer sleep duration across time points.

Shown are the direct associations of the independent, mediating, and dependent variable. Persistent shorter sleep duration represents the independent variable; C-reactive protein (CRP) at 9 years, CRP at 15 years, and interleukin 6 (IL-6) at 9 years represent the mediating factors, and PD at age 24 years represents the outcome. Three different path analyses were conducted, 1 per inflammatory marker. The covariates also included in these path analyses were Family Adversity Index, sex, and sleep problems at 24 years, as these were the most relevant covariates as indicated from the logistic regression analyses. In addition, we also controlled for body mass index (BMI), ie, BMI at 9 years when IL-6 or CPR at 9 years were included and BMI at 15 years when CRP at 15 years was included. Significant pathways are signified by solid arrows and nonsignificant pathways by dashed arrows.

Shown are the direct associations of the independent, mediating, and dependent variable. Persistent shorter sleep duration represents the independent variable; C-reactive protein (CRP) at 9 years, CRP at 15 years, and interleukin 6 (IL-6) at 9 years represent the mediating factors, and PEs at age 24 years represent the outcome. Three different path analyses were conducted, 1 per inflammatory marker. The covariates also included in these path analyses were Family Adversity Index, sex, and sleep problems at 24 years, as these were the most relevant covariates as indicated from the logistic regression analyses. In addition, we also controlled for body mass index (BMI), ie, BMI at 9 years when IL-6 or CPR at 9 years were included, and BMI at 15 years when CRP at 15 years was included. Significant pathways are signified by solid arrows and nonsignificant pathways by dashed arrows.

eAppendix 1. Details of the ALSPAC Cohort

eAppendix 2. Details About Ethnicity

eTable 1. Differences in Sociodemographic Variables Between Nonparticipating and Participating Individuals in the Study

eTable 2. Bayesian Information Criterion, Vuong-Lo-Mendell-Rubin Likelihood Test P Values, and Entropy for Classes 2 to 6, for Each of the Nighttime Sleep Duration Values

eTable 3. Absolute Rates of Psychosis for Each of the Nighttime Sleep Duration Classes

eAppendix 3. Mediating Effect of Inflammatory Markers in the Association Between Persistent Shorter Nighttime Sleep Duration and PEs at 24 Years

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Morales-Muñoz I , Marwaha S , Upthegrove R , Cropley V. Role of Inflammation in Short Sleep Duration Across Childhood and Psychosis in Young Adulthood. JAMA Psychiatry. Published online May 08, 2024. doi:10.1001/jamapsychiatry.2024.0796

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Role of Inflammation in Short Sleep Duration Across Childhood and Psychosis in Young Adulthood

• 1 Institute for Mental Health, School of Psychology, University of Birmingham, Birmingham, United Kingdom
• 2 Specialist Mood Disorders Clinic, Zinnia Centre, Birmingham, United Kingdom
• 3 The Barberry National Centre for Mental Health, Birmingham, United Kingdom
• 4 Early Intervention Service, Birmingham Women’s and Children’s NHS Trust, Birmingham, United Kingdom
• 5 Melbourne Neuropsychiatry Centre, Department of Psychiatry, The University of Melbourne & Melbourne Health, Melbourne, Victoria, Australia

Question   What is the association of persistent shorter sleep duration across childhood with psychosis in young adulthood?

Findings   In this cohort study including 12 394 children and 3962 young adults, a group of individuals characterized by persistent shorter sleep duration from infancy until childhood were identified, and this group was significantly associated with psychosis at age 24 years. Further, elevated interleukin 6 (IL-6) levels at 9 years partially mediated these associations.

Meaning   Shorter sleep duration across childhood, particularly if sustained at all time points, may be considered as a risk for the development of psychosis in adulthood; inflammation as measured by IL-6 level could be one of the potential mechanistic pathways.

Importance   Short sleep duration over a prolonged period in childhood could have a detrimental impact on long-term mental health, including the development of psychosis. Further, potential underlying mechanisms of these associations remain unknown.

Objective   To examine the association between persistent shorter nighttime sleep duration throughout childhood with psychotic experiences (PEs) and/or psychotic disorder (PD) at age 24 years and whether inflammatory markers (C-reactive protein [CRP] and interleukin 6 [IL-6]) potentially mediate any association.

Design, Setting, and Participants   This cohort study used data from the Avon Longitudinal Study of Parents and Children. Data analysis was conducted from January 30 to August 1, 2023.

Exposures   Nighttime sleep duration was collected at 6, 18, and 30 months and at 3.5, 4 to 5, 5 to 6, and 6 to 7 years.

Main Outcomes and Measures   PEs and PD were assessed at age 24 years from the Psychosislike Symptoms Interview. CRP level at ages 9 and 15 years and IL-6 level at 9 years were used as mediators. Latent class growth analyses (LCGAs) were applied to detect trajectories of nighttime sleep duration, and logistic regressions were applied for the longitudinal associations between trajectories of nighttime sleep duration and psychotic outcomes at 24 years. Path analyses were applied to test CRP and IL-6 as potential mediators.

Results   Data were available on 12 394 children (6254 female [50.5%]) for the LCGA and on 3962 young adults (2429 female [61.3%]) for the logistic regression and path analyses. The LCGA identified a group of individuals with persistent shorter nighttime sleep duration across childhood. These individuals were more likely to develop PD (odds ratio [OR], 2.50; 95% CI, 1.51-4.15; P  < .001) and PEs (OR, 3.64; 95% CI, 2.23-5.95; P  < .001) at age 24 years. Increased levels of IL-6 at 9 years, but not CRP at 9 or 15 years, partially mediated the associations between persistent shorter sleep duration and PD (bias-corrected estimate = 0.003; 95% CI, 0.002-0.005; P  = .007) and PEs (bias-corrected estimate = 0.002; 95% CI, 0-0.003; P  = .03) in young adulthood.

Conclusions and Relevance   Findings of this cohort study highlight the necessity of addressing short sleep duration in children, as persistence of this sleep problem was associated with subsequent psychosis. This study also provides preliminary evidence for future targeted interventions in children addressing both sleep and inflammatory responses.

Short sleep duration can have a detrimental impact on a child’s development in the short, medium, and long term. For instance, children who do not get enough sleep are at increased risk for mental health problems, 1 attention-deficit/hyperactivity disorder (ADHD), 2 and/or behavioral problems. 3

When considering the impact of short sleep duration in childhood, most studies have considered specific and isolated time points. However, as sleep duration is highly variable across childhood, 4 this approach may not be very accurate to capture children with persistent sleep problems and, thus, at highest risk for adverse outcomes. 5 For instance, children with lack of sleep at a specific time point may not experience this lack of sleep at later ages due to developmental changes 6 or to improvement of environmental factors impacting sleep. 7 Therefore, it is crucial to identify those children with persistent lack of sleep over time, as this is the group of individuals for whom the detrimental impact of short sleep will be greatest and who will experience the most negative outcomes in the long term.

Among mental health problems associated with short sleep duration is psychosis, which is a pervasive and distressing mental health condition. 8 Sleep deprivation or sleep restriction studies support the potential causal role of short sleep duration in the development of psychotic symptoms 9 - 11 ; however, these studies assessed sleep loss over the short term and cannot be used to understand its long-term impact. Longitudinal studies that investigate the effect of childhood sleep problems as a risk factor for psychosis are scarce and inconclusive, with most studies focusing on other sleep aspects, such as parasomnias. 12 , 13 We recently examined the associations of behavioral sleep aspects in childhood with psychotic and borderline personality disorder (BPD) symptoms in adolescence and found that shorter sleep duration was associated with BPD but not with psychosis. 14 However, this study selected a specific and isolated time point in childhood. It therefore remains possible that the chronicity of short sleep over the childhood period could constitute a risk factor for psychosis, rather than short sleep duration at a discrete developmental time point.

Potential mechanisms linking short sleep duration in childhood with later psychosis are likewise unexplored. Among potential candidates including neuromaturation, cognition, and biological mechanisms, 15 inflammation has recently been suggested as a potential mediating factor, 16 given known reciprocal links between both sleep and the immune system 17 , 18 and evidence for low-grade inflammation in people with psychosis. 19 For instance, existing evidence in adults suggests that short sleep duration prospectively predicts increases in inflammation, 20 which would support a potential underlying role of inflammation in the associations between short sleep and psychosis. Nevertheless, to date, only 1 cross-sectional study has explored relationships between inflammatory markers, sleep, and psychosis, 21 finding that outpatients with schizophrenia had worse sleep quality and higher levels of inflammatory markers compared with controls.

The current study examined the prospective association of persistent shorter sleep duration across childhood with psychosis in young adulthood, and the potential mediating role of inflammation. We focused on psychosis in young adulthood as this is when most cases of psychosis begin. 22 We hypothesized that we would detect a small group of individuals with persistent shorter sleep duration across childhood, based on recent research on sleep duration trajectories across childhood. 23 , 24 Further, persistent shorter sleep duration across childhood would increase the risk for psychosis, 10 and elevated inflammatory markers would partially mediate these prospective associations. 16

The Avon Longitudinal Study of Parents and Children (ALSPAC) is a UK birth cohort study examining the determinants of development, health, and disease during childhood and beyond. 25 , 26 Pregnant women who were residents in Avon, UK, with expected dates of delivery between April 1, 1991, and December 31, 1992, were invited to take part. The initial number of pregnancies enrolled was 14 541. Of these, there were a total of 14 676 fetuses, resulting in 14 062 live births and 13 988 children alive at 1 year of age. Further details of the ALSPAC study are provided in eAppendix 1 in Supplement 1 . Ethical approval was obtained from the law and ethics committee of the ALSPAC study. Written informed consent was obtained from the parents of the children. We followed the Strengthening the Reporting of Observational Studies in Epidemiology ( STROBE ) reporting guidelines.

Parent-reported sleep information was collected at 6, 18, and 30 months, and at 3.5, 4 to 5, 5 to 6, and 6 to 7 years. Nighttime sleep duration was calculated from questions asking what time the child normally went to sleep in the evening and woke up in the morning.

Psychotic experiences (PEs) were identified through the semistructured Psychosislike Symptom Interview. 27 PEs occurring in the past 6 months covered the 3 main positive symptom domains: hallucinations, delusions, and thought interference. Cases of PEs were defined as individuals with definite PEs.

We identified individuals with psychotic disorder (PD) at 24 years based on the following criteria 28 : (1) having PEs rated as definite and not associated with sleep or fever, (2) PEs regularly recurring over the previous 6 months, and (3) PEs reported as very distressing or having a very negative impact on social/occupational functioning.

Blood samples were collected from nonfasting participants during clinic assessment at 9 years at approximately the same time of the day. At 15 years, blood was drawn while fasting at a largely consistent time of day, limiting potential for diurnal effects on inflammatory markers. 29 Samples were immediately spun, frozen, and stored at −80 °C, and there was no evidence of previous freeze-thaw cycles during storage. High-sensitivity C-reactive protein (CRP) was measured at 9 and 15 years at the same laboratory by automated particle-enhanced immunoturbidimetric assay (Roche UK). There was no evidence of freeze-thaw cycles during storage. Additionally, interleukin 6 (IL-6) at 9 years was measured by single enzyme-linked immunosorbent assay (R&D Systems). All assay coefficients of variation were less than 5%. Higher levels of IL-6 30 and CRP 31 were associated with higher probability of infection. IL-6 and CRP levels were log transformed and z transformed. 32

Multiple family risk factors were assessed using the Family Adversity Index (FAI) during pregnancy and at 2 and 4 years. FAI includes items on early parenthood, housing and family conditions, or social network. Points were summed at each time point for a total FAI score. Early adversity is a well-established risk factor for poor mental health 33 and poor sleep. 34

Sleep problems at 24 years were assessed with a self-reported item (“Do you have difficulties getting to sleep or back to sleep?”) from the Revised Clinical Interview Scale, 35 to control for potential co-occurring sleep problems.

Child sex, gestational age, race and ethnicity, and maternal age when the baby was born were mother reported. Race and ethnicity categories included the following: Bangladeshi, Black African, Black Caribbean, Black Other, Chinese, Indian, Pakistani, White, and other ethnic group (not specified). Further information is available in eAppendix 2 in Supplement 1 . These were selected as covariates due to their impact on psychosis and sleep. 36 The child’s body mass index (BMI) at 9 and 15 years old (ie, same time points as inflammatory markers) was also selected based on the well-known associations between obesity/increased BMI and elevated inflammatory markers. 37 , 38

Finally, neurodevelopment disorders, which are also highly linked with both sleep problems 39 and psychotic symptoms, 40 were included as covariates. More specifically, we selected ADHD diagnosis at 8 years using the parent-reported Development and Well-Being Assessment, 41 and autistic spectrum disorder at 9 years, which was measured asking the mother whether the child had a diagnosis of autism, Asperger syndrome, or autism spectrum disorder at the age of 9 years.

Latent class growth analyses (LCGAs) were performed using Mplus, version 8 (Muthén and Muthén), to identify classes of individuals with differing levels of nighttime sleep duration across childhood. The indicator variables were nighttime sleep duration at 6, 18, and 30 months, and at 3.5, 4 to 5, 5 to 6, and 6 to 7 years. Several models were fit by increasing the number of classes. 42 The best-fitting classification model was chosen according to fit indices (Bayesian information criteria [BIC] and Vuong-Lo-Mendell-Rubin [VLMR] test). 42 Lower BIC values suggest better model fit. A significant VLMR value suggests that a K-class model fits the data better than a (K-1) class model. Entropy was also used to select the best model fit; entropy with a value approaching 1 indicates clear delineation of classes. Finally, to decide the optimal class solution, an emphasis was placed on large enough group sizes and clinical relevance. Missing values due to attrition were handled by the full information maximum likelihood estimation method. 42

We next investigated the prospective associations between the classes identified by LCGA, and psychosis at 24 years, with a particular focus on the class represented by persistently shorter nighttime sleep duration. We conducted logistic regression analyses using SPSS, version 27 (IBM Corp). The derived latent classes from the LCGA were the predictors (with the class with larger sample as reference), and psychosis at 24 years was the outcome. We included the 2 psychotic outcomes (PEs and PD) in separate models. We tested unadjusted associations, as well as adjusted associations controlling for all confounders (except for BMI). To deal with missingness, we conducted logistic regressions to identify significant factors associated with attrition (eTable 1 in Supplement 1 ). Using the variables associated with selective dropout as the factors, we fitted a logistic regression model to determine weights for each individual using the inverse probability of response.

We last examined the potential role of CRP at 9 and 15 years and IL-6 level at 9 years as mediators in the association between persistent shorter nighttime sleep duration across childhood with psychosis at 24 years. We conducted 6 separate path analyses in SPSS Amos, version 27 (IBM Corp), one per inflammatory maker and psychotic outcome. The independent variable was dichotomized (1 = class referring to persistent shorter nighttime sleep duration; 0 = the other classes). We controlled for FAI, sex, and sleep problems at 24 years, as these were the most relevant covariates as indicated from the logistic regression analyses. We also controlled for BMI at the same time point as the inflammatory marker. We used bootstrapped bias-corrected 95% CIs and P values for assessing the significance of the standardized indirect associations. Missing data were dealt with using the full information maximum likelihood method. 43 , 44 Data were analyzed from January 30 to August 1, 2023. All P values were 2-sided, and P < .05 was considered statistically significant.

Data were available on 3962 young adults (2429 female [61.3%]; 1533 male [38.7%]) with information reported on psychotic outcomes at 24 years ( Table 1 ) and 12 394 children (6254 female [50.5%]; 6140 male [49.5%]). Child race and ethnicity were parent identified as follows: 7 Bangladeshi (0.1%), 11 Black African (0.1%), 76 Black Caribbean (0.6%), 44 Black Other (0.4%), 30 Chinese (0.2%), 54 Indian (0.4%), 22 Pakistani (0.2%), 12 062 White (97.4%), and 82 other (0.7%).

eTable 2 in Supplement 1 shows VLMR, BIC, and entropy for all models assessed (2-6 classes). Overall, a 4-class model provided the best fit. VLMR showed a statistically significant difference for the 2-class, 3-class, and 4-class models (all P values <.001). The 5- and 6-class models did not offer a significantly better fit than the 4- and 5-class models, respectively. Decreases in BIC became considerably smaller in 4 classes compared with 3 classes. Finally, the 4-class model reported the highest entropy values (0.799). Further, all classes from the 4-class model included sufficient sample sizes and were clinically relevant. The 4 derived classes are presented in Figure 1 . Class 1 represented persistent shorter nighttime sleep duration (301 participants [2.4%]); class 2, persistent intermediate-shorter nighttime sleep duration (2743 participants [21.7%]); class 3, persistent longer nighttime sleep duration (1684 participants [13.6%]); and class 4, persistent intermediate-longer nighttime sleep duration (7666 participants [61.9%]).

The adjusted logistic regressions showed that persistent shorter nighttime sleep duration (class 1) was significantly associated with PD (odds ratio [OR], 2.50; 95% CI, 1.51-4.15; P  < .001) and PEs (OR, 3.64; 95% CI, 2.23-5.95; P  < .001), at 24 years ( Table 2 ). Absolute rates of psychosis for each of the nighttime sleep duration classes appear in eTable 3 in Supplement 1 .

In examining whether CRP at 9 years partially mediated the association between persistent shorter nighttime sleep duration and PD at 24 years, path analysis model fit indexes indicated good model fit (χ 2  = 3.11; P  = .21; root mean square error of approximation [RMSEA] = 0.006; comparative fit index [CIF] = 0.999). However, we did not observe a mediation of CRP at 9 years in the association between exposure and outcome (bias-corrected estimate = 0; 95% CI, −0.001 to 0; P  = .13). Similar results were obtained for CRP at 15 years as the mediating factor, with a good model (χ 2  = 1.08; P  = .78; RMSEA = 0.005; CIF = 0.999) but without an indirect association between exposure and outcome (bias-corrected estimate = 0; 95% CI, −0.001 to 0.001; P  = .73). When we examined IL-6 level at 9 years as the mediating factor, we observed excellent model fit values (χ 2  = 1.02; P  = .80; RMSEA = 0; CIF = 1.000), and also that IL-6 at 9 years partially mediated the association between exposure and outcome (bias-corrected estimate = 0.003; 95% CI, 0.002-0.005; P  = .007). Direct associations for each of the path analyses conducted for PD appear in Figure 2 .

Regarding PEs at 24 years as the outcome, similar results as the path analyses reported above were obtained (eAppendix 3 in Supplement 1 ). Notably, and as it happened with PD, we observed excellent model fit values when we examined IL-6 level at 9 years as the mediating factor (χ 2  = 1.01; P  = .60; RMSEA = 0; CIF = 1.000), observing also only that IL-6 level at 9 years partially mediated the association between exposure and outcome (bias-corrected estimate = 0.002; 95% CI, 0.001-0.003; P  = .03). Direct associations for each of the path analyses for PEs appear in Figure 3 .

To our knowledge, this is the first study to report that persistent shorter sleep duration across childhood was associated with an increased risk of psychosis in young adulthood. Further, we found that these associations can be partially mediated by specific inflammatory levels (ie, increased levels of IL-6 at 9 years). However, our results indicate that although significant, the size of the association and the proportion of the association mediated was low, which indicates that other factors are also potentially explaining these associations. Future studies should further explore the specific role of inflammation as a potential mediating factor in the prospective associations between sleep and psychosis, together with other potentially relevant mediating factors.

We first found that persistent shorter sleep duration from infancy until childhood was associated with both PEs and PD in young adulthood. Several studies have investigated the predictive role of sleep loss in psychotic symptoms by restricting or depriving sleep in healthy adults, finding that sleep loss leads to increases in psychotic symptoms. 10 However, these studies are only able to explore the short-term associations of sleep loss on psychosis and not the long-term associations. 10 , 11 Previous large epidemiological studies have also shown a correlation between sleep problems and psychotic disturbances. 45 - 47 However, these studies have largely examined sleep disturbance in adulthood and have been reliant on cross-sectional reports assessing concurrent sleep and psychotic experiences or short-term manipulations of sleep. Although previous prospective studies investigating sleep duration in childhood have not observed an association with psychotic experiences in early and later adolescence, 12 - 14 these assessed sleep duration at specific time points in childhood rather than the trajectory of sleep duration over time. These prior studies also assessed psychotic experiences in adolescence. Our finding that a trajectory of sleep duration representing persistent lack of sleep in childhood was associated with psychosis at 24 years suggests that chronicity of sleep loss is more important than lack of sleep at a specific time point. 5 This is likely due to sleep duration being highly variable in childhood, 48 necessitating multiple assessments over childhood to capture its developmental course. Our findings also may suggest that the detrimental impact of inadequate sleep during childhood does not manifest until young adulthood in association with psychosis, coinciding with the median age of onset for these disorders. 49 Finally, 2 of the prospective studies mentioned previously, 12 , 13 which also used ALSPAC data, found that nightmares at specific time points in childhood, but not sleep duration, were associated with a greater risk of developing psychotic symptoms in adolescence. Together with our findings, this may suggest that persistent shorter sleep across childhood could itself be partly attributed to a higher incidence of nightmares at earlier developmental stages. Therefore, future research should consider the role of other childhood sleep problems in the associations between chronic shorter sleep and psychosis.

We additionally tested for the potential mediating role of inflammation in the prospective associations between persistent shorter sleep duration and psychosis. We found that levels of IL-6, but not CRP, partially mediated these associations. Longitudinal studies in adults have shown that short sleep duration prospectively associates with increases in inflammation, including CRP and IL-6 levels. 20 Further, existing cross-sectional studies also indicate shorter sleep duration and greater CRP in young adolescents. 50 Finally, a recent review supports that sleep deprivation alters inflammatory immune processes via multiple pathways, which could lead to increased susceptibility to chronic inflammatory diseases, 51 supporting potential biological plausibility that persistent lack of sleep over time might lead to inflammatory alterations in the future. Overall, these findings are potentially explained by the dynamic role of sleep in regulating the immune system, 17 and thus, lack of sleep may lead to changes in the effector systems that regulate the immune system and consequently lead to abnormal increases in inflammatory responses. However, although the existent evidence supports that inflammation is a consequence of persistent sleep disturbance, 20 a risk factor for psychosis 32 and a potential mediating factor between sleep and psychosis, 16 to date, only 1 study 21 has investigated the co-occurrence of sleep disturbance and inflammation in outpatients with schizophrenia. However, as this was a cross-sectional study, the authors were unable to identify whether inflammatory markers mediated the sleep problems in these patients with schizophrenia.

The findings of our current study are congruent with a recent study of ours using ALSPAC data where we found that IL-6 level, but not CRP level (both at 9 years), partially mediated the associations between sleep problems in childhood and ADHD diagnosis at 10 years. 2 Another recent study 52 from our group also using ALSPAC data found that CRP level at 9 and 15 years, but not IL-6 level at 9 years, partially mediated the associations between persistent anxiety across childhood and psychosis at 24 years. Based on this limited evidence, we could hypothesize that different physiological actions associate with each of these inflammatory markers 53 ; thus, IL-6 level may be more sensitive to sleep problems, although anxiety may have a greater association with CRP levels, in the pathway to psychosis. A role for an IL-6-specific pathway in early developmental processes is also supported by a recent mendelian randomization study in the UK Biobank, which found that genetically predicted IL-6 level, but not CRP level, was associated with brain structure, 54 suggesting that early exposure to elevated IL-6 levels may affect development of brain structure in areas relevant to neurodevelopment (and therefore sleep), whereas CRP level might be more environmentally responsive.

Strengths of our study include the large population-based sample size, the longitudinal design, and the inclusion of sleep duration across childhood. However, this study has some limitations. First, this study only focused on parent- or self-reported sleep, which could be different from objective sleep. 55 For instance, parent- or self-reported sleep is subject to bias and subjective interpretation, in addition to be influenced by internal and/or external factors (eg, parents who are under greater stress or themselves are sleeping poorly might interpret their child as sleeping less). Second, daytime sleep duration was not available for all the time points, and thus, we were not able to provide trajectories on daytime or total sleep duration. Third, most participants were of White race and were all residents in the same geographic area in the UK, which limits the generalizability of our findings. Fourth, our results could be explained by other potential underlying factors that have not been explored in this study. Examples of these include common genetic factors or existing anxiety symptoms or those that have yet to be defined and/or evaluated. We focused on inflammation as it is modifiable and due to its links with both sleep and psychosis. The focus of future research should be to untangle the contribution of other relevant mediating factors. Fifth, in the absence of an experimental manipulation or intervention, we cannot imply here that shorter sleep duration is causally contributing to later psychotic experiences, and it is possible that the association might be due to other factors associated with both childhood sleep and psychosis. Although we have controlled for several relevant factors in these associations, other unknown factors might potentially explain these associations. Finally, although here we focused on the associations with psychosis, it is likely that these associations are transdiagnostic considering that inflammatory markers have been associated with a range of psychiatric disorders in this same cohort. 2 , 32 , 52 Therefore, future studies should explore the pathways of associations with other mental health outcomes.

Results of this cohort study suggest that persistent shorter sleep duration across childhood was associated with higher risk of developing psychosis in young adulthood. Further, IL-6 level, but not CRP level, partially mediated these prospective associations. Our findings highlight the necessity of addressing short sleep duration in children, as persistence of these sleep problems may be a risk factor for subsequent psychosis. Our study also provides evidence to develop future targeted early interventions in children addressing both sleep duration and specific inflammatory levels, to prevent future adverse outcomes.

Accepted for Publication: February 28, 2024.

Published Online: May 8, 2024. doi:10.1001/jamapsychiatry.2024.0796

Open Access: This is an open access article distributed under the terms of the CC-BY License . © 2024 Morales-Muñoz I et al. JAMA Psychiatry .

Corresponding Author: Isabel Morales-Muñoz, PhD, Institute for Mental Health, School of Psychology, University of Birmingham, 52 Pritchatts Rd, Birmingham B15 2SA, United Kingdom ( [email protected] ).

Author Contributions: Dr Morales-Muñoz and Professor Marwaha had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. Professor Upthegrove and Dr Cropley contributed equally to this work and share senior authorship.

Concept and design: All authors.

Acquisition, analysis, or interpretation of data: All authors.

Drafting of the manuscript: Morales-Muñoz, Upthegrove.

Critical review of the manuscript for important intellectual content: Marwaha, Upthegrove, Cropley.

Statistical analysis: Morales-Muñoz, Marwaha, Upthegrove.

Obtained funding: Upthegrove.

Administrative, technical, or material support: Marwaha, Marwaha, Upthegrove, Upthegrove.

Supervision: Upthegrove.

Conflict of Interest Disclosures: Dr Upthegrove reported receiving financial support from the National Institute for Health and Care Research Oxford Health Biomedical Research Centre; serving as honorary general secretary for British Association for Psychopharmacology; serving as deputy editor of British Journal of Psychiatry from 2018 to 2023; being a current member of Scientific Advisory Group: MIND 2023; receiving speaker fees from Otsuka; and receiving consultant fees from Vitaris and Springer Healthcare outside the submitted work. No other disclosures were reported.

Funding/Support: This work was supported in part by grant 217065/Z/19/Z from the UK Medical Research Council and Wellcome; core support for Avon Longitudinal Study of Parents and Children from the University of Bristol; the National Institute for Health and Care Research (NIHR) Oxford Health Biomedical Research Centre; the NIHR Mental Health Translational Research Collaboration; and National Health and Medical Research Council investigator grant 1177370 and University of Melbourne Dame Kate Campbell Fellowship (Dr Cropley).

Role of the Funder/Sponsor: The funders had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

Disclaimer: The views expressed are those of the authors and not necessarily those of the National Institute for Health and Care Research or the Department of Health and Social Care.

Data Sharing Statement: See Supplement 2 .

Additional Contributions: We thank all the families who took part in this study, the midwives for their help in recruiting them, and the whole Avon Longitudinal Study of Parents and Children team, which includes interviewers, computer and laboratory technicians, clerical workers, research scientists, volunteers, managers, receptionists, and nurses. Beyond usual salary, no one received financial compensation for their contribution.

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5 Reasons to Include Psychosis in Mental Health Awareness

Let's not leave psychosis out of this may's mental health awareness campaigns..

Posted May 1, 2024 | Reviewed by Davia Sills

• What Is Psychosis?
• Find counselling to treat psychosis
• Psychosis is common; as many as 1 in 10 may experience a psychotic symptom in their lifetime.
• Tragically, research strongly links schizophrenia to risk of suicide.
• A meta-analysis found 57 percent of individuals who had a first episode of psychosis recovered; there is hope.

May 1st marks the beginning of Mental Health Awareness Month. Never before have we in America seen such an acceptance of the realities of emotional pain and the healing that can come from reaching out for help. Still, amid anti- stigma campaigns focused on difficulties such as depression and anxiety , there is one area that often remains unacknowledged: the experiences of those living with psychosis and schizophrenia.

We can change this. What follows are five reasons that mental health awareness must include these experiences.

1. Psychosis and Schizophrenia Are Common.

While a diagnosis of schizophrenia only affects one in 100 people, the lifetime prevalence of experiences associated with psychosis may affect as many as 1 in 10 people (Beavan et al., 2011). Still, psychosis remains a topic that is not often talked about in our culture, leading many who are suffering from it to feel quite alone.

2. People Need to Know That There Is Hope.

Historically, conditions involving psychosis were seen as a sort of "kiss of death" diagnosis. Yet, with innovative treatments, research is finding that an overwhelming majority of people who experience psychosis in their lifetime recover. A meta-analysis of studies involving a total of 12,301 participants experiencing a first episode of psychosis found that 58 percent made a full recovery, with a greater proportion achieving remission each year (Lally et al., 2017).

3. Misunderstanding Is Dangerous.

Despite positive outcomes overall, a recent research study featuring a review of medical records found that schizophrenia was more frequently linked to suicide than any other mental health condition (Song et al., 2020). More recent onset of the illness is linked to a higher risk of suicide (Popovic et al., 2014). Clinicians hypothesize that this may be due to a loss of hope. Through education , we can dispel the dangerous myth that schizophrenia represents a hopeless situation and show that recovery is possible.

4. Acceptance Saves Lives.

Research shows that social isolation is a major risk factor for suicidal ideation in individuals living with schizophrenia (Bornheimer et al., 2020). By spreading awareness and moving toward acceptance, we may be able to overcome the unfortunate reality of isolation experienced by those with schizophrenia instead by embracing these individuals and the many strengths they have to share.

5. Early Identification of Psychosis Can Make All the Difference.

Early identification of psychosis has been shown to strongly improve outcomes (McGorry, 2015). In the case of schizophrenia, some research suggests that untreated psychosis can result in more grey matter being lost in the brain. Some experts believe intervention within the early years of psychosis to be just as critical and make just as big a difference as if treatment is delivered within the first 30 minutes of a stroke. By increasing awareness of psychosis, we may also enhance identification and intervention for a better quality of life and chances of recovery.

Beavan, V., Read, J., & Cartwright, C. (2011). The prevalence of voice-hearers in the general population: a literature review. Journal of Mental Health , 20 (3), 281-292.

Blumer, D. (2002). The illness of Vincent van Gogh. American Journal of Psychiatry , 159 (4), 519-526.

Bornheimer, L. A., Li, J., Im, V., Taylor, M., & Himle, J. A. (2020). The role of social isolation in the relationships between psychosis and suicidal ideation. Clinical Social Work Journal , 48 , 54-62.

Lally, J., Ajnakina, O., Stubbs, B., Cullinane, M., Murphy, K. C., Gaughran, F., & Murray, R. M. (2017). Remission and recovery from first-episode psychosis in adults: systematic review and meta-analysis of long-term outcome studies. The British Journal of Psychiatry , 211 (6), 350-358.

McGorry, P. D. (2015). Early intervention in psychosis: obvious, effective, overdue. The Journal of nervous and mental disease , 203 (5), 310-318.

Popovic, D., Benabarre, A., Crespo, J. M., Goikolea, J. M., González‐Pinto, A., Gutiérrez‐Rojas, L., & Vieta, E. (2014). Risk factors for suicide in schizophrenia: systematic review and clinical recommendations. Acta Psychiatrica Scandinavica , 130 (6), 418-426.

Song, Y., Rhee, S. J., Lee, H., Kim, M. J., Shin, D., & Ahn, Y. M. (2020). Comparison of suicide risk by mental illness: a retrospective review of 14-year electronic medical records. Journal of Korean medical science , 35 (47).

Jennifer Gerlach, LCSW, is a psychotherapist based in Southern Illinois who specializes in psychosis, mood disorders, and young adult mental health.

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Mental Health Matters Podcast: Pathways to Recovery: Psychosis and Schizophrenia

May 9, 2024 • 75th Anniversary

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Episode summary.

Psychosis, a condition marked by a loss of touch with reality, is distressing for those who experience it and their loved ones. If left untreated, psychosis can have serious impacts on people's lives. But the good news is there's hope. In this episode, we talk with Dr. Robert Heinssen, a leader in the development and adoption of coordinated specialty care for treating psychosis. We learn about the signs and symptoms of psychosis, discuss coordinated specialty care, and explore how NIMH research in psychosis and schizophrenia fundamentally changed the health care landscape.

Dr. Heinssen : People may start not so much by hearing voices, but they might hear sounds or their name being called, and they can look around and check and see, "Well, I don't know where that came from." They may become a little bit anxious and attentive of what's going on in their environment, and maybe they start being a little afraid and suspicious that people around them might be observing them or monitoring them in some way. So changes in all of those areas would be some of the early signs that something is amiss.

Dr. Gordon : Psychosis, a condition marked by a loss of touch with reality, is distressing for both those who experience it and their loved ones. If left untreated, psychosis can have serious impacts on people's lives. But the good news is there's hope. Hello, and welcome to Mental Health Matters, a National Institute of Mental Health podcast. I'm Dr. Joshua Gordon, Director of NIMH, and today we'll be talking with Dr. Robert Heinssen, a leader in the development and adoption of coordinated specialty care for treating psychosis. In this episode, we'll learn about the signs and symptoms of psychosis, talk about coordinated specialty care, and discuss how NIMH research in psychosis and schizophrenia fundamentally changed the healthcare landscape. Welcome to Dr. Robert Heinssen of the National Institute of Mental Health. Bob, it's a pleasure to have you here today.

Dr. Heinssen : Dr. Gordon, thank you for this opportunity, and I am equally pleased to be here with you.

Dr. Gordon : Today we're going to talk about psychosis, which is a serious mental condition, of course. Can you talk about what that is exactly?

Dr. Heinssen : Sure. So, psychosis is a condition that affects an individual's perception of reality, their thinking, and their functioning. So to unpack that a little bit, people who are experiencing psychosis may see or hear things that aren't apparent to other individuals. They may have difficulties in their thinking in terms of memory or concentration. Those difficulties may impede their ability to converse with somebody in a fluent way, which has some impact on the person's social relationships, interpersonal relationships. And that can get to be a problem in situations like school and work.

Dr. Gordon : It sounds like it's a real challenge and a burden for those who have it. What causes psychosis?

Dr. Heinssen : Well, there are a variety of pathways to psychosis. You could have a medical condition or an acute infection, a fever that would, in some cases, cause some of these symptoms. Sometimes abuse of substances or alcohol can cause psychotic symptoms. And there are some conditions that are independent of those causes that are mental disorders that start usually in late adolescence and, if untreated, can progress into the person's young adult and adult life.

Dr. Gordon : One of the mental illnesses we often think of as associated with psychosis is schizophrenia. Can you talk about the relationship between psychosis in general and schizophrenia specifically?

Dr. Heinssen : Sure. So, schizophrenia is a very disabling condition, but it includes among the symptoms of that condition, psychosis is a central feature. To make a diagnosis of schizophrenia, professionals require a period of time where psychotic symptoms are present before they'll make the determination that it's clearly schizophrenia. So, for a young person, some of those cognitive problems and perceptual problems might become a barrier to them functioning effectively in a school situation. The anxiety and distress that they feel may cause them to withdraw from other people around them, their friends, other students, even their family members. And that would create the social difficulty and isolation that is often seen later in schizophrenia. And again, without intervention, this can spiral into a set of symptoms and then functional problems that really impede the person's ability to achieve expected developmental milestones of education, relationships, work, and so forth.

Dr. Gordon : So psychosis, and in particular the psychosis that accompanies schizophrenia can be devastating. It can really prevent people from being able to lead normal lives.

Dr. Heinssen : I think devastating is the right word. It's devastating for the individual who is experiencing these symptoms. It's devastating to family members who observe changes and often are unsure of what is driving those changes.

Dr. Gordon : What's one thing you'd want people to understand about psychosis?

Dr. Heinssen : One thing I'd want people to understand is that behind the symptoms are human beings that have hopes and dreams and aspirations just like the rest of us. The symptoms sometimes create a barrier between the person with psychosis and others. If you look behind those symptoms, you see the promise of a human being, of an individual who wants the same things that you want out of life and has the same aspirations, the same type of goals, and the same type of prospects. So if we look beyond the symptoms to the human being, we'll perhaps have more compassion to offer this kind of assistance that help people get to the kind of futures that we all want.

Dr. Gordon : Can people recover from a psychotic episode? Can people get better?

Dr. Heinssen : So, Josh, a little bit of history here. If you asked me that question in 1990, I, like most mental health professionals, would say, "Well, people will get better with treatment. Their chances for full recovery are probably slight." And that was the message that healthcare professionals delivered in the late 1980s, early 1990s. But through research that has identified a critical period for intervention in the early stages of psychosis, we now have a very different story, a much more optimistic story that early intervention can really help people gain control of these symptoms, to get back on track with things like school and relationships and work. And with enduring care, over time, they can expect to lead productive, fulfilling, and meaningful life. So yes. Short answer, yes, recovery is possible.

Dr. Gordon : Tell me about ways that we might be able to help people recognize that something is wrong.

Dr. Heinssen : It's not always clear that something that it's a start of an illness or a disorder, it could just be people might say the child is going through a phase or having a rough spot, but educating the individuals who are experiencing the condition, the parents or caregivers who were surrounding them, the health care providers that would be the first professionals to come in contact and then mobilizing our healthcare system so that there are open doors when individuals present for a consultation and potential care that they have rapid access to those services, that the services can rapidly perform an evaluation and then, when indicated, can rapidly start the treatment. All of those things reduce the interval between the onset of symptoms and the initiation of treatment. And we know from NIMH-supported research that intervals, often called the duration of untreated psychosis, is an important factor in determining how well people will respond to treatment and to what extent they will recover in the long term.

Dr. Gordon : So it's important to detect risk for psychosis early because getting people into treatment early means that they can have better outcomes.

Dr. Heinssen : Yes, time is our enemy. The faster we can identify and intervene, the much more potent are our existing interventions.

Dr. Gordon : Let's say someone does have psychosis. They have schizophrenia, so not necessarily the first episode. What's the role of medication and other forms of treatment for individuals with psychosis?

Dr. Heinssen : We do have individual treatments that do help with components of the experience of psychosis. So antipsychotic medications are an effective strategy for dealing with some of the perceptual problems, the hallucinations that people might be seeing or hearing things that others don't see. They are all also affected with some of the distortions and thinking, some of these ideas that others are monitoring them, there are suspiciousness or worries in that regard. Antipsychotic medications can help with that component of psychosis. Psychotherapies, particularly cognitive and behavioral psychotherapies, are a very effective way of dealing with the distress that people feel and for managing the disruption that has occurred in their lives.

The cognitive and behavioral therapies can help the person, one, come to terms with the experience that they're having. It can reinstill an optimism that recovery is possible and it can help them map out a treatment plan that will set out a roadmap and goals for resuming their normal activities. In addition to that, we know that family education and support is very crucial in helping the family be a support to the individual and help them as they negotiate or navigate their recovery from these episodes.

Dr. Gordon : An important effort in understanding how best to care for these young people who are experiencing their first episode of psychosis was funded by NIMH. The recovery after an initial schizophrenia episode or RAISE Study. What were the main findings? What was involved in getting that off the ground?

Dr. Heinssen : So, a little historical context. By the late 1990s, researchers throughout the world were actually recognizing this idea that early intervention in this critical window could make a real difference. It could help people recover from their initial episode of psychosis and could put them onto a path of more normal functioning. So there were a number of research studies that were exploring how this could be done, and in those, they were testing various models that had these multiple components to address the various symptoms of psychosis. So a number of us at NIMH were looking at these results and thinking, if this could work in the United States, this really could be a very big advance for young people with psychosis and their families.

So three research aims, feasibility, effectiveness, and scalability, were at the heart of the recovery after an initial schizophrenia episode initiative. And NIMH launched that in 2008 and we ended up funding two studies. One of them was a comparative effectiveness study. This took place in 34 community clinics throughout the United States. And 17 of these clinic programs were assigned to that type of coordinated treatment. And then the remaining 17 clinics provided treatment as usual. That study addressed the questions of feasibility and effectiveness. And then a second study, an implementation study, explored what would be potential barriers to implementing such a coordinated approach in public health settings across the U.S.

And that study identified barriers, but more importantly, they developed approaches to be able to surmount those barriers and make it possible that this intervention would be able to be delivered with fidelity and to be done on a broad scale. We had stunning success in both studies. Coordinated treatment was more effective than treatment as usual in terms of improving quality of life and reducing distressing symptoms, and helping individuals return to school and work. These programs led to the adoption of coordinated specialty care by the states of New York and Maryland immediately after the research was concluded. So those two studies set a foundation for a broad implementation of this new approach across the United States.

Dr. Gordon : Can you talk about what effect the RAISE Study has had on mental health care, in particular for health care for first-episode psychosis in the U.S.?

Dr. Heinssen : Sure. I'll start this by saying that NIMH science has been a very critical element in this success story. But it's one element and one thing that I learned is as terrific as our science is, if we don't have partnerships with key stakeholders, it's not a given that science will actually make its way into the healthcare system. So in this case, we did this study in the context of growing awareness among federal partners, among advocacy groups, among private foundations, that early intervention was really a new concept that should be exploited.

And we worked very hard with all of those stakeholders to be able to translate the science into new clinical practice. And hats off to our partners at the Substance Abuse and Mental Health Services Administration who embraced this new scientific approach and partnered with us in disseminating the new approaches, in training people in being able to implement them, and then providing the resources or channeling the resources that Congress provided through their community mental health block grant to fund these new programs, these coordinated specialty care programs via a set aside to their block grant program.

So all of this came together, the science, the partnerships, and the coordinated effort to move the science into practice. And today, it's a much different world. In 2008, we know that there were only two states that had committed to early intervention as a state policy in mental health care. And we estimate that there were only about a dozen high-quality specialty care programs in the United States at that time. A dozen years later, there are over 350 of these programs in all 50 states, and they today serve tens of thousands of young people each year.

Dr. Gordon : Can you compare what treatment and prognosis is like for individuals experiencing their first episode of psychosis before and after RAISE?

Dr. Heinssen : So if we look back in the United States in the late 1990s and early 2000s, in academic circles, there was recognition that early intervention was the way to go, and people were studying ways to do that, but that message had not gone to the broader community. So if you were somebody experienced a first episode psychosis, in all likelihood, your symptoms would really not be recognized until some sort of crisis occurred that required either an emergency department visit or an unplanned inpatient treatment, or in some cases, contact with the police that might result in arrest and involuntary commitment to one of these treatment facilities.

Once you got into treatment, the chances were that you were going to be evaluated and treated by somebody who didn't have a wealth of experience in early psychosis. So your care would likely be fragmented. It may not have been up to the guidelines that existed for medication treatment at that point, and it would not have been continuous. You would have been discharged from an inpatient facility and left on your own, perhaps with the help of your family, to try to navigate outpatient services. Now, today, the best-case scenario is very different. In these programs that have established referral networks in the community, very often, a person can be referred to a first-episode psychosis program before an initial hospitalization. So the differences are really kind of night and day, and the outcomes are also night and day.

Dr. Gordon : Early intervention is key. Before RAISE, before these clinics, did people have to wait a long time for care in order to get it?

Dr. Heinssen : Yeah. In the United States, believe it or not, a person could be psychotic for anywhere between one and three years.

Dr. Gordon : Years?

Dr. Heinssen : Years.

Dr. Gordon : Wow.

Dr. Heinssen : In the RAISE program, the average amount of time a person waited was 18 months. And think about that. Psychotic symptoms, they're very dramatic, and they're very disabling, and they are associated with a lot of distress and pain. And for people experiencing those symptoms for that period of time, it's just astounding that was the state of care.

Dr. Gordon : So RAISE showed us that we can reduce the time to treat psychosis, and we can get people better and keep them better if we get them into a coordinated specialty care treatment and ensure continuity of care. What has NIMH been up to try to solidify that success of RAISE, to make sure that we're doing the best we can to treat individuals in their first episode of psychosis?

Dr. Heinssen : So the results of the RAISE study, the principal results started to become available around 2014, 2015. I think at that point there were maybe somewhere around 50 or 60 of these programs nationwide. So we started thinking there's 50 or 60 of these programs, and it would be great if we had 50 excellent programs in the United States. But imagine what would happen if you linked those programs together so that they could talk to one another, they could share data, they could share learning. So that became the beginning of an idea that we imagined, an Early Psychosis Intervention Network, or EPINET. And the idea started in 2015. And then we took some lessons learned from the RAISE program in developing that idea. We started funding regional networks in 2019.

So this would be a network of like-minded programs that offered services within a defined area. And then we have linked those regional networks through a national data coordinating center. And so together, this enterprise embraces 8 regional networks, 101 community clinics throughout the United States, well, in 17 states. And we're anticipating that somewhere between 3,000 and 4,000 young people with first-episode psychosis will be enrolled in these programs.

Dr. Gordon : Wow. So 100 clinics, thousands of individuals, all participating in an effort to really understand how best to take care of people with first-episode psychosis, what are they learning?

Dr. Heinssen : I like to think of this. If you're a person with cancer and you go to a cancer clinic that's affiliated with a research program, you go in there and you know that information about your care is going to be utilized by that clinic to help them improve the quality of the care that they offer and then also to offer you opportunities to participate in research that may benefit others by generating increased knowledge about cancer and its treatment. We're building that same kind of culture within the EPINET clinics that people come in there and they're first struck with this idea that this is a different experience. The person who's entering this program will know that I'm in a program that looks at its procedures continuously with an eye towards improvement. That's the kind of system that a person will be entering in.

Dr. Gordon : So these learning health care systems, these clinics, they're not just providing care, they're asking the questions that will help them provide better care in the future. Bob, what's it like for a patient who's in one of these first episode psychosis clinics, from their point of view, what are they getting?

Dr. Heinssen : So they're getting access to a treatment team. So it all starts with conversations about what's happened and what's been disrupted for you. What would you like to return to or what would you like to get out of treatment? And then here are some of the tools that we have that we can make available to you. And then that conversation with the treatment team leads to an individualized treatment plan that usually is a combination of the medication, the psychotherapy, the family intervention, and these rehabilitation or supported employment and education activities. Then the interesting thing, what I hear from people who run these programs, young people are interested in getting back on track with their lives. And they embrace this as their job. Their job is to get better and get back on track.

Dr. Gordon : So how long will a person stay in one of these first-episode psychosis clinics? How long will they be in a program like that?

Dr. Heinssen : I would say between one and three years is probably typical. Most programs organize themselves around two years. Important to note that the treatment plans are individualized. So this is not like you're going through a program and that you have the same program over the course of a year or two years. You have an individualized treatment plan, and that plan adjusts continuously based on your recovery, your emerging needs, and so forth.

Dr. Gordon : What inspires you as a scientist?

Dr. Heinssen : So before I came to NIMH, I worked in a psychiatric hospital that was the center of a community treatment program for serious mental illness, for schizophrenia. And I ran a treatment program for adults with serious mental illness, several hundred adults. And these programs, I thought they were quite good in embracing a lot of the science-based treatments that were available at that time. I was very proud of the fact that we were able to move people out of hospital settings into the community and to help them lead independent lives in the community. One day, I was giving a talk about this treatment program and what was available to people with serious mental illness, and I gave the talk. I was very proud to talk about our programs, about how they were science-based, the outcomes we had achieved. And I was feeling very good about this meeting. There was a long line of people who wanted to speak with me afterwards.

The last person was somebody who looked very familiar to me. The woman introduced herself and she said, " Dr. Heinssen , you might remember me. My son so-and-so was in your program." I immediately remembered who she was talking about, and I was thinking, "Boy, this is going to be great. He did so well." He was a young man who had had schizophrenia for several years by the time he came into our program. But we had helped him to achieve his goal of returning to college. He was going to community college. He was taking a course. He was living in an assisted living facility, but he was living in the community. And he was also working part-time in a grocery store. And I thought this was a great...this is a great outcome. And I was waiting for this feedback, boy, what a great outcome. And the woman started crying and she said, "I know I should be grateful, he's doing so much better than he was but we had hoped for so much more."

And that really arrested me thinking that on the one hand, we did the best that we could do given the current state of knowledge, but hubris was not called for in this situation. Humility was called for. I had the opportunity to come to NIMH very shortly after that, and when I had the opportunity to jump on to this early intervention research, that mother's story was in the back of my mind. Her voice was ringing in my ears that we had hoped for so much more. And I thought, "There's so much more that we need to do." That was the initial impetus and that's been the thing that has kept me in the race for as long as I have been, that it is only through research and then through the hard work of implementing the research that we can hope for better outcomes. That really has been the motivation for me over these 22 years. So to that woman, if you hear this podcast, thank you very much. You changed the whole trajectory of my career.

Dr. Gordon : This concludes this episode of Mental Health Matters. I'd like to thank our guest, Dr. Robert Heinssen, for joining us today. And I'd like to thank you for listening. If you enjoyed this podcast, please subscribe and tell a friend to tune in. If you'd like to know more about psychosis or coordinated specialty care, please visit nimh.gov. We hope you'll join us for the next podcast.

Early Intervention in Psychosis services: A systematic review and narrative synthesis of the barriers and facilitators to implementation

Affiliations.

• 1 Discipline of Public Health and Primary Care, Institute of Population Health, School of Medicine, Trinity College Dublin, Dublin, Ireland.
• 2 National Clinical Programme for Early Intervention in Psychosis, Health Service ExecutiveDublin, Ireland.
• 3 Rise, South Lee Mental Health Services, Cork & Department of Psychiatry, University College Cork.
• 4 Trinity College Dublin Library, Trinity College Dublin, Dublin, Ireland.
• PMID: 34913421
• PMCID: PMC8792869
• DOI: 10.1192/j.eurpsy.2021.2260

Background: Early intervention in psychosis (EIP) services target the early manifestation of psychosis and provide multidisciplinary care. They demonstrate effectiveness and cost-effectiveness. Implementation of EIP services is inconsistent and piecemeal. This systematic review and narrative synthesis aims to identify barriers and facilitators to EIP service implementation.

Methods: We conducted an electronic search of databases (EMBASE, Medline, Web of Science, and PsychINFO) to detect papers reporting EIP service implementation findings and associated barriers and facilitators. The search occurred between June to August 2020, and again in January 2021. Articles meeting inclusion criteria were extracted and narratively synthesized. A quality assessment was conducted using the Mixed Methods Appraisal Tool.

Results: Twenty-three studies were selected. The most common study design was descriptive accounts of implementation. Patient age ranged varied from 14 to 35 years. We identified three barrier and facilitator domains: (a) system; (b) services; and (c) staff, and a range of subdomains. The most frequent subdomains were "funding" and "strength of collaboration and communication between EIP and outside groups and services". Associations between domains and subdomains were evident, particularly between systems and services.

Conclusions: A range of barriers and facilitators to EIP implementation exist. Some of these are generic factors germane across health systems and services, while others are specific to EIP services. A thorough prior understanding of these challenges and enablers are necessary before implementation is attempted. Accounting for these issues within local and national contexts may help predict and increase the likelihood of services' success, stability, and longevity.

Keywords: Early intervention in psychosis; barriers; early intervention; facilitators; implementation; psychosis.

Publication types

• Research Support, Non-U.S. Gov't
• Systematic Review
• Cost-Benefit Analysis
• Psychotic Disorders* / therapy
• Young Adult