The Views of Patients with Isolated Rapid Eye Movement Sleep Behavior Disorder on Risk Disclosure

• Published in: Movement disorders 2023-06, Vol.38 (6), p.1089-1093
• Main Authors: Pérez‐Carbonell, Laura, Simonet, Cristina, Chohan, Harneek, Gill, Aneet, Leschziner, Guy, Schrag, Anette, Noyce, Alastair J.
• Format: Article
• Language: English
• Subjects: Aged; autonomy; Behavior disorders; Brief Report; Brief Reports; Diagnosis; Disclosure; Eye movements; Humans; isolated REM sleep behavior disorder; Male; Movement disorders; Neurodegenerative diseases; Parkinson Disease - complications; Parkinson Disease - diagnosis; Parkinson Disease - epidemiology; Parkinson's disease; Polysomnography; REM sleep; REM Sleep Behavior Disorder - complications; REM Sleep Behavior Disorder - diagnosis; risk disclosure; Sleep disorders; Synucleinopathies
• ISSN: 0885-3185; 1531-8257
• DOI: 10.1002/mds.29403

Background Isolated rapid eye movement sleep behavior disorder (iRBD) is associated with an increased risk of Parkinson's disease and other synucleinopathies. There is no consensus about disclosure of this risk to patients with iRBD. Objective The objective of our study was to assess the experiences of risk disclosure in a group of patients with iRBD and their views on what, when, and how this should be done. Methods A survey was administered to patients with iRBD to explore their experiences and views on risk disclosure. Results Thirty‐one patients with iRBD (28 males; mean age, 70 [SD 8.7] years; mean disease duration, 8.7 [SD 6.4] years) were included. A third reported they had not been informed about the link between iRBD and other conditions by clinicians at diagnosis, but 90% would have liked to have received prognostic information, and 60% indicated that this should happen at the point that iRBD was diagnosed. Most participants wanted this information to come from the clinician diagnosing and treating iRBD (90.3%). Almost three‐quarters (72.2%) had searched for this information online. Conclusions Patients with iRBD mostly wished to have received information regarding the potential implications of iRBD when the diagnosis was made. © 2023 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.