孤立性 REM 睡眠行为障碍风险沟通中的态度、策略与价值框架:患者与医护人员视角的范围综述
Attitudes, Strategies and Value Frameworks Guiding Risk Communication in Isolated REM Behaviour Disorder: A Scoping Review of Perspectives From Patients and Healthcare Professionals.
一句话摘要
范围综述系统梳理 iRBD 风险告知相关文献(共 8 篇),归纳患者与医护人员的态度与偏好、所用沟通策略及告知前后出现的情感与行为过程。
为什么重要
把 iRBD 作为前驱期标志带来的伦理与沟通问题单独提出:当进展风险很高而干预手段有限时,如何告知本身成为临床决策的一部分。
英文摘要原文
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.
所属章节
条目编号 P136 · 元数据经 Crossref / Europe PMC 回查