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Risk Disclosure in Prodromal Parkinson's Disease
Author(s) -
Schaeffer Eva,
Toedt Inken,
Köhler Susanne,
Rogge Annette,
Berg Daniela
Publication year - 2021
Publication title -
movement disorders
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 3.352
H-Index - 198
eISSN - 1531-8257
pISSN - 0885-3185
DOI - 10.1002/mds.28723
Subject(s) - guideline , disease , rem sleep behavior disorder , delphi method , medicine , expert opinion , psychology , medline , parkinson's disease , clinical psychology , intensive care medicine , pathology , political science , statistics , mathematics , law
Background Impressive progress in the understanding of the prodromal phase of Parkinson's disease (PD) in recent years has enabled the generation of disease prediction models. However, a remaining diagnostic uncertainty and lack of therapeutic options for affected individuals has resulted in a variety of ethical issues that have not to date been addressed sufficiently. Moreover, differences in the specificity of prodromal symptoms and possible subtypes of PD, especially the presence of rapid eye movement (REM) sleep behavior disorder (RBD), may have an important impact on prognostic counseling. Objectives To derive a guideline for risk disclosure in prodromal PD based on the current literature and expert opinion. Methods We performed (1) a literature review on prognostic counseling in PD and (2) consulted with international experts on prodromal PD using a semi‐structured questionnaire based on a Delphi approach to evaluate recommendations for risk disclosure in PD. Results The l iterature research revealed only 11 publications addressing prognostic counseling, with only two studies directly addressing affected individuals and most studies focusing on risk disclosure in RBD. The expert survey revealed the importance of distinguishing between individuals with and without RBD in prognostic counseling. Conclusions Based on the current literature and expert recommendations, a guideline for risk disclosure in prodromal PD for clinical care and research could be elaborated. Prognostic counseling should include differentiation between individuals with and without RBD, taking into account the high uncertainty of risk calculation in RBD‐negative prodromal PD. © 2021 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society