Category: Parkinson's Disease: Non-Motor Symptoms
Objective: To investigate what, when and how patients with iRBD would like to receive information regarding the potential future implications of having iRBD, once diagnosis has been made.
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.
Method: 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 healthcare 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%).
Conclusion: Patients with iRBD mostly wished to receive information regarding the potential future implications 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.
References: 1 Schaeffer E, Toedt I, Köhler S, Rogge A, Berg D. Risk Disclosure in Prodromal Parkinson’s Disease. Mov Disord. 2021 Dec;36(12):2833-2839. doi: 10.1002/mds.28723.
To cite this abstract in AMA style:
H. Chohan, C. Simonet, A. Gill, A. Schrag, A. Noyce, L. Pérez-Carbonell. What, when and how should the information on iRBD and risk of Parkinson’s disease and related conditions be communicated? [abstract]. Mov Disord. 2022; 37 (suppl 2). https://www.mdsabstracts.org/abstract/what-when-and-how-should-the-information-on-irbd-and-risk-of-parkinsons-disease-and-related-conditions-be-communicated/. Accessed May 11, 2025.« Back to 2022 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/what-when-and-how-should-the-information-on-irbd-and-risk-of-parkinsons-disease-and-related-conditions-be-communicated/