Evidence map›Paper›PMID 35524616›Full record

ArticleWorld psychiatry : official journal of the World Psychiatric Association (WPA)2022

The lived experience of psychosis: a bottom-up review co-written by experts by experience and academics.

Paolo Fusar-Poli, Andrés Estradé, Giovanni Stanghellini, Jemma Venables, Juliana Onwumere, Guilherme Messas, Lorenzo Gilardi, Barnaby Nelson, Vikram Patel, Ilaria Bonoldi and 18 more

Registry-linked trialOpen access · bronzeAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in World psychiatry : official journal of the World Psychiatric Association (WPA), 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT07713849 (Adapting and Improving Transition Care for First Episode Psychosis), which is not on this map. Cited by 125 papers, 12 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
125citing papers in PubMed, 12 pooled it
976.7field-weighted citation impact, top 1% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

NCT07713849 recruitingnot on this mapstarted 2026, after this paper: background citation

Adapting and Improving Transition Care for First Episode Psychosis

Typeobservational_patient_registrySponsorUniversity of ChicagoRan2026 to 2029Enrolled75ConditionsSchizoaffective Disorders, Bipolar Disorder With Psychotic Features, Schizophrenia Disorders, Major Depressive Disorder With Psychotic FeaturesArmsTransition Care Team
3 · Its place in the literature

Who cites it

125 citing papers in PubMed, 12 syntheses or guidelines pooled it, 208 citations in OpenAlex.

  1. Pooled it
  2. Increasing uptake of physical health checks for people living with severe mental illness: a systematic review.The British journal of general practice : the journal of the Royal College of General Practitioners · 2026
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  13. Trial
  14. Article
  15. The lived experience of trans persons: a bottom-up review co-written by experts by experience and academics.World psychiatry : official journal of the World Psychiatric Association (WPA) · 2026
    Article
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65 more citing papers are in PubMed but not listed here.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

28 authors at 17 institutions in 7 countries.

Paolo Fusar-PoliEarly Psychosis: Interventions and Clinical-detection (EPIC) Lab, Department of Psychosis Studies, Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, UK.
Andrés EstradéEarly Psychosis: Interventions and Clinical-detection (EPIC) Lab, Department of Psychosis Studies, Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, UK.
Giovanni StanghelliniDepartment of Psychological, Territorial and Health Sciences, "G. d'Annunzio" University, Chieti, Italy.
Jemma VenablesEarly Psychosis: Interventions and Clinical-detection (EPIC) Lab, Department of Psychosis Studies, Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, UK.
Juliana OnwumereNational Institute for Health Research, Maudsley Biomedical Research Centre, South London and Maudsley, London, UK.
Guilherme MessasMental Health Department, Santa Casa de São Paulo School of Medical Sciences, São Paulo, Brazil.
Lorenzo GilardiComo, Italy.
Barnaby NelsonOrygen, Parkville, VIC, Australia.
Vikram PatelDepartment of Global Health and Social Medicine, Harvard Medical School, Boston, MA, USA.
Ilaria BonoldiDepartment of Psychosis Studies, Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, UK.
Massimiliano AragonaRoman Circle of Psychopathology, Rome, Italy.
Ana CabreraAsociación Española de Apoyo en Psicosis, Madrid, Spain.
Joseba RicoAsociación Española de Apoyo en Psicosis, Madrid, Spain.
Arif HoqueYoung Person's Mental Health Advisory Group (YPMHAG), King's College London, London, UK.
Jummy OtaikuYoung Person's Mental Health Advisory Group (YPMHAG), King's College London, London, UK.
Nicholas HunterNHS South London and Maudsley (SLaM) Recovery College, London, UK.
Melissa G TameliniInstitute of Psychiatry, Hospital das Clínicas de São Paulo, São Paulo, Brazil.
Luca F MaschiãoMental Health Department, Santa Casa de São Paulo School of Medical Sciences, São Paulo, Brazil.
Mariana Cardoso PuchivailoMental Health Department, Santa Casa de São Paulo School of Medical Sciences, São Paulo, Brazil.
Valter L PiedadeMental Health Department, Santa Casa de São Paulo School of Medical Sciences, São Paulo, Brazil.
Péter KériGlobal Alliance of Mental Illness Advocacy Networks-Europe (GAMIAN-Europe), Brussels, Belgium.
Lily KpodoSouth London and Maudsley NHS Foundation Trust, London, UK.
Charlene SunkelGlobal Mental Health Peer Network (GMHPN), South Africa.
Jianan BaoOASIS service, South London and Maudsley NHS Foundation Trust, London, UK.
David ShiersPsychosis Research Unit, Greater Manchester Mental Health Trust, Manchester, UK.
Elizabeth KuipersNational Institute for Health Research, Maudsley Biomedical Research Centre, South London and Maudsley, London, UK.
Celso ArangoDepartment of Child and Adolescent Psychiatry, Institute of Psychiatry and Mental Health, Hospital General Universitario Gregorio Marañón School of Medicine, IiSGM, CIBERSAM, Complutense University of Madrid, Madrid, Spain.
Mario MajDepartment of Psychiatry, University of Campania "L. Vanvitelli", Naples, Italy.
King's College London · GBFaculdade de Ciências Médicas da Santa Casa de São Paulo · BRSouth London and Maudsley NHS Foundation Trust · GBAsociación Española de Psiquiatría del Niño y el Adolescente · ESCentro de Investigación Biomédica en Red de Salud Mental · ESComelz (Italy) · ITFondazione Roma · ITGeorgia Mental Health Consumer Network · USGlobal Alliance of Mental Illness Advocacy Networks-Europe · BEHarvard Global Health Institute · USHospital das Clínicas da Faculdade de Medicina da Universidade de São Paulo · BRKeele University · GBNIHR Maudsley Biomedical Research CentreUniversity of Campania "Luigi Vanvitelli" · ITUniversity of Chieti-Pescara · ITUniversity of Melbourne · AUUniversity of Pavia · IT

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Psychosis is the most ineffable experience of mental disorder. We provide here the first co-written bottom-up review of the lived experience of psychosis, whereby experts by experience primarily selected the subjective themes, that were subsequently enriched by phenomenologically-informed perspectives. First-person accounts within and outside the medical field were screened and discussed in collaborative workshops involving numerous individuals with lived experience of psychosis as well as family members and carers, representing a global network of organizations. The material was complemented by semantic analyses and shared across all collaborators in a cloud-based system. The early phases of psychosis (i.e., premorbid and prodromal stages) were found to be characterized by core existential themes including loss of common sense, perplexity and lack of immersion in the world with compromised vital contact with reality, heightened salience and a feeling that something important is about to happen, perturbation of the sense of self, and need to hide the tumultuous inner experiences. The first episode stage was found to be denoted by some transitory relief associated with the onset of delusions, intense self-referentiality and permeated self-world boundaries, tumultuous internal noise, and dissolution of the sense of self with social withdrawal. Core lived experiences of the later stages (i.e., relapsing and chronic) involved grieving personal losses, feeling split, and struggling to accept the constant inner chaos, the new self, the diagnosis and an uncertain future. The experience of receiving psychiatric treatments, such as inpatient and outpatient care, social interventions, psychological treatments and medications, included both positive and negative aspects, and was determined by the hope of achieving recovery, understood as an enduring journey of reconstructing the sense of personhood and re-establishing the lost bonds with others towards meaningful goals. These findings can inform clinical practice, research and education. Psychosis is one of the most painful and upsetting existential experiences, so dizzyingly alien to our usual patterns of life and so unspeakably enigmatic and human.

Indexed as

bottom-up approachchronic stageexperts by experiencefirst-episode stagelived experiencephenomenologypremorbid stageprodromal stagepsychiatric treatmentPsychosisrecoveryrelapsing stage

Identifiers

PMID35524616
PMCPMC9077608
OpenAlexW4229070589

What OpenQuestion holds

Textmetadata
Read underepoch 390

Registered trials

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.