To know or not to know? Opinions of patients with Parkinson’s Disease on disclosing risk of phenoconversion in RBD
To know or not to know? Opinions of patients with Parkinson’s Disease on disclosing risk of phenoconversion in RBD
StatusVoR
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Authors
Marcinkowska, Aneta
Bogucki, Andrzej
Kroemeke, Aleksandra
Gajos, Agata
Monograph
Monograph (alternative title)
Date
2023-11-03
Publisher
Journal title
Neurologia i Neurochirurgia Polska
Issue
5
Volume
57
Pages
Pages
438-443
ISSN
0028-3843
ISSN of series
Access date
2023-10-27
Abstract PL
Abstract EN
Introduction. The aim of our study was to find out the opinion of patients with Parkinson’s Disease (PD) whose disease was preceded by REM sleep behaviour disorder (RBD) regarding early information about the high risk of phenoconversion in RBD. Clinical rationale for the study. RBD is an early clinical manifestation of α-synucleinopathies with a more than 90% risk of phenoconversion to PD, dementia with Lewy bodies (DLB) or multiple system atrophy (MSA). It remains a subject for debate as to whether and how RBD patients should be informed about the high risk of phenoconversion. The patient’s right to full knowledge regarding his or her health conflicts with the potentially destructive impact of this information on his or her mental state and quality of life of them and their relatives. Material and methods. Thirty-nine patients with PD whose disease was preceded by RBD were surveyed. Data on the course
of RBD and PD was collected. Questions were asked about early information about the high risk of phenoconversion to patients with RBD and factors determining the opinion of the surveyed persons. Results. The majority (> 60%) of respondents gave a positive answer when asked whether patients should be informed about their high risk of developing PD once diagnosed with RBD. Only a few (7.7%) respondents believed that disclosing such information to the patient should be possible only after obtaining his or her consent. Respondents associated consent to information about the high risk of developing PD in people with RBD with high expectations of the healthcare system. We were unable to determine whether factors such as the gender of the subject, the clinical course of the PD, and the RBD duration had an impact on patients’ opinions regarding disclosing knowledge about phenoconversion. Conclusions and clinical implications. Our study provides important information that should influence physicians’ communication with patients with RBD, especially regarding how they communicate about the high risk of phenoconversion.
Abstract other
Keywords PL
Keywords EN
REM sleep behaviour disorder
phenoconversion
risk disclosure
patients’ expectations
physician-patient relationship
phenoconversion
risk disclosure
patients’ expectations
physician-patient relationship
Keywords other
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