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Development and Validation of a Self-Reported Questionnaire On Users’ Opinions About Schizophrenia: a Participatory Research

Background: Although users’ involvement in mental health research has repeatedly been acknowledged as having a positive influence on research quality, this rarely happens. Aims: To develop and validate a Questionnaire on Users’ Opinions (QOU) about schizophrenia, in close collaboration with 279 persons affected by this disorder. Methods: A preliminary list of items concerning the opinions of users with schizophrenia regarding causes, treatments and psychosocial consequences of the disorder was developed by 38 users with schizophrenia and 40 professionals who attended a workshop. Psychometric properties of the QOU were tested on 241 users with schizophrenia, 149 of whom were randomly assigned to a test—retest study and 92 to a face-validity study. Content and construct validity were explored in the whole sample. Results: The final version of the QOU contains: (1) 24 items on the psychosocial consequences of schizophrenia, grouped into six subscales, whose Cronbach’s alpha ranged between 0.55 and 0.74; (2) five multiple choice items on the Italian psychiatric law; (3) 12 open questions; and (4) four yes/no skipping items. Items’ reliability, measured by Cohen’s kappa coefficient, ranged between 0.55 and 0.92. Conclusion: This questionnaire may be useful to assess patients’ beliefs about schizophrenia and to target psychosocial interventions for this mental disorder.