Attitudes, Strategies and Value Frameworks Guiding Risk Communication in Isolated REM Behaviour Disorder: A Scoping Review of Perspectives From Patients and Healthcare Professionals

Idiopathic/isolated REM sleep behaviour disorder (iRBD) is widely recognized as a key prodromal condition associated with a high risk of progression to α-synucleinopathies. Despite this, disclosure of risk related to such early signs of neurodegeneration remains controversial in clinical practice. This scoping review aims to systematically analyse literature regarding the risk disclosure, focusing on attitudes and preferences of patients as well as healthcare professionals, communication strategies used, emotional and behavioural processes that emerge pre, during and post disclosure in different settings. Results found in 8 articles show that few studies have focused specifically on risk disclosure to individuals with iRBD and that, despite its recognized importance, it has not been consistently integrated into routine clinical practice. For healthcare professionals, the main obstacles include uncertainty in formulating individualized prognoses, ethical challenges linked to the principle of beneficence and concerns about the possible emotional impact of disclosure. From the patients' viewpoint, there is a clear need for comprehensive and robust information about their condition, even though obtaining accurate and trustworthy sources can be difficult. Risk disclosure is considered essential by both patients and professionals, but a systematic step-by-step approach has yet to be implemented for people with iRBD on progression to neurodegenerative diseases.