Should diagnostic terms describing increased risk for psychosis be renamed? The answer from Italian patients, caregivers, and clinicians

Introduction: At-risk mental state (ARMS), ultra high risk (UHR), and attenuated psychotic syndrome (APS) are competing terms used to identify young people at elevated risk for developing a psychotic disorder. However, there is currently no agreement on a definitive terminology, and it is unclear whether existing diagnostic terms are sufficiently informative and potentially stigmatizing. The current study is aimed at: 1) generating new diagnostic terms to describe the “at risk” concept by former patients with lived experience of mental illness; 2) testing literacy, informativeness, and potential stigma related to both existing and newly generated terms; 3) investigating preferences related to the best timing to introduce the at-risk concept in clinical practice and the extent and context of the information presented. Methods: A focus group involving youth with a previous experience of mental illness has been conducted (aim 1). An ad-hoc questionnaire has been administered to 61 clinicians, 47 patients and 60 caregivers to collect their attitudes and preferences (aims 2, 3). Results: Newly generated terms were: tendenza alla psicosi (TAP; psychosis proneness), alterazione della realtà personale (ARP; impairment of personal reality), and disregolazione della soggettività (DS; subjectivity dysregulation). Literacy on “at risk” terms was low among patients and caregivers (around 50% were not familiar with them). The terms ARP and ARMS were perceived as least stigmatizing and most informative, while the term UHR was considered the most stigmatizing. Participants agreed on the full disclosure of the diagnosis, when a trusting relationship with the clinician has been established. Caregivers believe their presence is necessary when the diagnosis is communicated, while most patients believe the opposite. Discussion: Patients generated term ARP, alongside with ARMS should be considered to be used in in the context of early intervention. Previous (i.e., Polari et al., 2021) and ongoing replications of the current study in other geographical areas may inform culture-sensitive psychiatric labels.