Sofia Francesca Aprile, Alessandro Rodolico, Djordje Basic, Kerem Böge, Markus Bühner, Christoph U Correll, Cristiano Cutuli, Peter Falkai, Gerhard Gründer, Alkomiet Hasan, Stefania Lanzafame, Josef Priller, Christian Nikolaus Schmitz, Maria Salvina Signorelli, Irene Bighelli, Filippo Caraci, Stefan Leucht
Lived experience highlights marked heterogeneity that extends beyond traditional symptom dichotomies and is only partly captured by current diagnostic frameworks. Incorporating patient-reported perspectives may support more nuanced, person-centered assessment and evaluation of treatment response.
BACKGROUND AND HYPOTHESIS: Schizophrenia spectrum disorders are typically described using positive and negative symptoms, yet standard diagnostic systems may not reflect the full range of how individuals experience the disorder. We hypothesized that synthesizing first-person accounts would yield a broader, clinically useful symptom framework that better represents lived experience.
STUDY DESIGN: We performed a systematic review and qualitative meta-synthesis following Enhancing Transparency in Reporting the Synthesis of Qualitative Research guidelines (PROSPERO: CRD420251069446). PubMed, PsycINFO, and Scopus were searched up to January 2026. Eligible studies used qualitative or mixed methods and reported first-person accounts from individuals with schizophrenia spectrum disorders. We included 52 peer-reviewed studies (2856 participants). We conducted two thematic syntheses: (1) general illness experience and (2) symptom experience organized using the Manual for Assessment and Documentation of Psychopathology in Psychiatry framework.
STUDY RESULTS: Across illness experience, five themes emerged: pervasive effects on physical, psychological, social, and relational life; stigma and isolation; interactions with medication, clinicians, and services; disruption and fragmentation of self, reality, and meaning; and coping strategies, including the protective role of social support. Across symptom experience, fear recurred across psychotic and non-psychotic domains, and participants often described psychosis as a transformed experience of reality rather than discrete symptoms. Accounts spanned disturbances in consciousness, perception, thinking, cognition, affect, and behavior.
CONCLUSIONS: Lived experience highlights marked heterogeneity that extends beyond traditional symptom dichotomies and is only partly captured by current diagnostic frameworks. Incorporating patient-reported perspectives may support more nuanced, person-centered assessment and evaluation of treatment response.