ArticleSleep2023
Patient values and preferences regarding prognostic counseling in isolated REM sleep behavior disorder.
Article in Sleep, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT07498452 (Exploring Unmet Needs Among Patients With Isolated REM Sleep Behavior Disorder), which is not on this map. Cited by 12 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Exploring Unmet Needs Among Patients With Isolated REM Sleep Behavior Disorder (iRBD) and Their Significant Others: A Multicenter Cross-Sectional Survey Study
Who cites it
12 citing papers in PubMed, 30 citations in OpenAlex.
- Personal and Family Perspectives Regarding Neurodegenerative Disorder Risk.Journal of community medicine & public health · 2026Article
- The Use of a Digital Social Forum in a Parkinson's Disease Risk Cohort: A Thematic Analysis of Forum Messages.Parkinson's disease · 2026Article
- The prodromal individuals' perspective on active recruitment for early detection of α-synucleinopathies.NPJ Parkinson's disease · 2025Article
- Predicting Phenoconversion in Isolated RBD: Machine Learning and Explainable AI Approach.Clocks & sleep · 2025Article
- A Narrative Review on Biochemical Markers and Emerging Treatments in Prodromal Synucleinopathies.Clinics and practice · 2025Review
- Communicating the risk of dementia: a scoping review.BMJ neurology open · 2025Article
- Article
- Disclosing the Risk Associated with Isolated REM Behavior Disorder: The Sleep Experts' Perspective.Movement disorders clinical practice · 2024Article
- Ethical Considerations for Identifying Individuals in the Prodromal/Early Phase of Parkinson's Disease: A Narrative Review.Journal of Parkinson's disease · 2024Review
- Perspectives of People At-Risk on Parkinson's Prevention Research.Journal of Parkinson's disease · 2024Review
- REM sleep behavior disorder: update on diagnosis and management.Arquivos de neuro-psiquiatria · 2023Article
- The Views of Patients with Isolated Rapid Eye Movement Sleep Behavior Disorder on Risk Disclosure.Movement disorders : official journal of the Movement Disorder Society · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
19 authors at 1 institution in 1 country.
Funding
Abstract
STUDY
objectivesIsolated REM sleep behavior disorder (iRBD) carries a high lifetime risk for phenoconversion to a defined neurodegenerative disease (NDD) including Parkinson disease, dementia with Lewy bodies, and multiple system atrophy. We aimed to examine iRBD patient values and preferences regarding prognostic counseling.
methodsOne hundred thirteen iRBD patient participants enrolled in the Mayo Clinic iRBD Patient Registry were sent an email survey concerning their values and preferences concerning NDD prognostic counseling and their experiences following diagnosis with iRBD.
resultsOf 81 respondents (71.7% response rate), the majority were men (74.0%) with an average age of 65.7 (±9.7) years. Responses indicated a strong preference toward receiving prognostic information about possible future NDD development. 92.5% of respondents felt knowledge concerning personal NDD risk was important, while 87.6% indicated prognostic discussions were important to maintaining trust in their physician. 95.7% indicated a desire for more information, while only 4.3% desired less information regarding their NDD prognostic risk. Most respondents strongly agreed that prognostic information was important to discuss with their family and friends and inform future life planning, and most expressed interest in learning more about future neuroprotective therapies and symptomatic treatments for parkinsonism and dementia.
conclusionsMost iRBD patients indicated strong preferences for disclosure of NDD prognostic risk and indicated that prognostic information was important for family discussions and future life planning. Future broader surveys and qualitative studies of clinic-based and ultimately community dwelling iRBD patients' values and preferences are needed to guide appropriately tailored and individualized prognostic counseling approaches following iRBD diagnosis.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.