Renaming ultra-high risk (UHR): Italian patients’, caregivers’, and clinicians’ attitudes towards established and newly generated terms to describe psychosis risk status

Introduction: Diagnostic terms in psychiatry can potentially deliver useful information and offer a basic understanding of clinical concepts for young individuals under care in mental health services, carers (i.e., close family members who care for the young patient), and clinicians. However, the use of stigmatizing labels has frequently been associated with poor engagement with clinical services and poor outcomes. Further, using informative and non-stigmatizing terms is crucial in youth with a clinical high-risk for psychosis (CHR-P) status since they both risk being stigmatized and receiving inappropriate treatments (i.e., antipsychotics). Based on pivotal research conducted in Australia, this study aimed to explore the acceptability and preference of both already used and newly generated diagnostic terms, as well as the most appropriate timing and context of diagnosis disclosure in an Italian sample of CHR-P patients, their carers, and clinicians. Methods: In a focus group with individuals with a lived experience of mental disorder, three alternative diagnostic terms were generated: “Tendenza alla psicosi,” “Alterazione della realtà personale,” and “Accenni di disregolazione della soggettività.” Then, a questionnaire was constructed and administered to 31 patients, 45 carers, and 59 clinicians in order to explore attitudes towards both newly generated and well-established terms (i.e., "Ad alto rischio di psicosi – Ultra high risk for psychosis [UHR]," "Sindrome psicotica attenuata," and "Stato mentale a rischio"). T- tests or Chi-square tests were used to analyze descriptive data gathered from the three groups. One- way ANOVA was performed to identify between-group differences, followed by post-hoc Bonferroni test. Results: We found the term "UHR" was considered stigmatizing and did not explain youth difficulties according to both patients and carers (although clinicians reported it was illustrative of the youth's difficulties). On the contrary, "Stato mentale a rischio" was one of the most preferred and illustrative terms for patients and clinicians. Concerning the new terms, "Tendenza alla psicosi" was one of the most preferred by patients and carers – even though clinicians considered it a stigmatizing term. Mixed results were found among groups about the opinions on "Alterazioni della soggettività." All groups agreed that diagnostic terms should be disclosed when the patient has established a trusting relationship with the clinician. Feedback on the diagnosis context varied among groups (nevertheless, more than half of the participants of each group agreed that the presence of the psychiatrist was necessary for the diagnosis disclosing). Conclusion: Findings highlighted the need for "renaming" the term UHR – at least in our Italian sample. Attitudes towards newly generated terms were mixed, with "Tendenza alla psicosi" being one the most appreciated by both youth and carers (but not clinicians). The already used "Stato mentale a rischio" showed to be one of the most preferred and not associated with high stigma – confirming its usefulness in clinical practice. Further research with broader samples is warranted to shed light on mixed results. Nevertheless, in order to promote engagement with early prevention services, the use of less stigmatizing terms and specific attention to the preferences over the diagnosis disclosure context are strongly needed.