What, when and how should the information about neurodegenerative disease risk in iRBD be communicated?. Issue 9 (12th August 2022)

• Record Type: Journal Article
• Authors: Chohan, Harneek; Simonet, Cristina; Gill, Aneet; Schrag, Anette; Noyce, Alastair J; Pérez-Carbonell, Laura
• Is Part Of: Journal of neurology, neurosurgery and psychiatry. Volume 93:Issue 9(2022)
• Page Start: e2
• Publication Date: 2022-08-12
• Subjects: Neurology -- Periodicals; Nervous system -- Surgery -- Periodicals; Psychiatry -- Periodicals; 616.8
• DOI: 10.1136/jnnp-2022-abn2.12
• Languages: English
• ISSNs: 0022-3050

Abstract

Abstract : Background: Idiopathic/isolated REM sleep behaviour disorder (iRBD) is characterised by vivid dreams with 'acting-out' behaviours due to REM sleep muscle atonia. It is associated with a risk of Parkinson's disease (PD) and other synucleinopathies. There is uncertainty about what should be disclosed to iRBD patients in terms of future risk1. Methods: A survey was administered to patients with iRBD and participating in the PREDICT-PD study. They were invited to complete a 9-question survey exploring the information they would like to receive about the potential future implications of having iRBD. Results: We interviewed 31 patients (28 males, 70yo, SD 8.7y) with iRBD (mean 8.7-year disease duration, SD 6.4). A third had not received any information about the link of iRBD with other conditions by health- care professionals. More than half (61%) had searched for that information online. Most patients (87%) wanted to receive prognostic information to help them make informed decisions about their future. The preferred time for this was when a diagnosis of iRBD was made rather than when parkinsonism starts (61% vs 7%). Most wanted this information to come from their iRBD specialist (93%). Conclusions: Patients with iRBD mostly wished to receive information regarding the potential future impli- cations of having iRBD when the diagnosis of iRBD is made. Taking account of patients' preferences is relevant to decide what, when and how to disclose prognostic information to patients with iRBD.