Prognostic Counseling for Patients With Idiopathic/Isolated REM Sleep Behavior Disorder: Should We Tell Them What's Coming? Yes

Louis, Erik K. St.

doi:10.1002/mdc3.12814

Cited by 15 publications

(20 citation statements)

References 15 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…In addition to the standard care established for iRBD, we recommend that sleep clinicians educate the patient on the risk of future neurodegenerative disease and the evidence regarding the benefits of exercise. 74 In individuals who are sedentary or would like assistance designing an exercise plan, consultative visits with a physical therapist may increase their exercise participation. 69,70 Therefore, we recommend consultative services with PT for a subset of iRBD patients who need an exercise prescription or have comorbidities that require activity adaptation.…”

Section: Early Prodromal Synucleinopathymentioning

confidence: 99%

Motor Dysfunction in REM Sleep Behavior Disorder: A Rehabilitation Framework for Prodromal Synucleinopathy

Summers

Rafferty

Howell

et al. 2021

Neurorehabil Neural Repair

View full text Add to dashboard Cite

Parkinson disease (PD) and other related diseases with α-synuclein pathology are associated with a long prodromal or preclinical stage of disease. Predictive models based on diagnosis of idiopathic rapid eye movement (REM) sleep behavior disorder (iRBD) make it possible to identify people in the prodromal stage of synucleinopathy who have a high probability of future disease and provide an opportunity to implement neuroprotective therapies. However, rehabilitation providers may be unaware of iRBD and the motor abnormalities that indicate early motor system dysfunction related to α-synuclein pathology. Furthermore, there is no existing rehabilitation framework to guide early interventions for people with iRBD. The purpose of this work is to (1) review extrapyramidal signs of motor system dysfunction in people with iRBD and (2) propose a framework for early protective or preventive therapies in prodromal synucleinopathy using iRBD as a predictive marker. Longitudinal and cross-sectional studies indicate that the earliest emerging motor deficits in iRBD are bradykinesia, deficits performing activities of daily living, and abnormalities in speech, gait, and posture. These deficits may emerge up to 12 years before a diagnosis of synucleinopathy. The proposed rehabilitation framework for iRBD includes early exercise-based interventions of aerobic exercise, progressive resistance training, and multimodal exercise with rehabilitation consultations to address exercise prescription, progression, and monitoring. This rehabilitation framework may be used to implement neuroprotective, multidisciplinary, and proactive clinical care in people with a high likelihood of conversion to PD, dementia with Lewy bodies, or multiple systems atrophy.

show abstract

Section: Early Prodromal Synucleinopathymentioning

confidence: 99%

Motor Dysfunction in REM Sleep Behavior Disorder: A Rehabilitation Framework for Prodromal Synucleinopathy

Summers

Rafferty

Howell

et al. 2021

Neurorehabil Neural Repair

View full text Add to dashboard Cite

show abstract

“…Ethical considerations should be emphasised in all dissemination campaigns, given the neurological implications of RBD and the current lack of disease-modifying treatments; therefore, personalised counselling should be the first priority when diagnosing RBD, and resources (such as in table 1) to promote RBD clinical trials should be emphasised. [139][140][141] Based on the rapid pace of ongoing RBD research, we anticipate in the very near future to engage a larger group of experts, patients, industry leaders and stakeholders who will enable highly impactful clinical trials to advance the field of RBD therapeutics and synucleinopathies.…”

Section: Increasing Awareness Of Rbdmentioning

confidence: 99%

Clinical trials in REM sleep behavioural disorder: challenges and opportunities

Videnović

Arnulf

et al. 2020

J Neurol Neurosurg Psychiatry

View full text Add to dashboard Cite

The rapid eye movement sleep behavioural disorder (RBD) population is an ideal study population for testing disease-modifying treatments for synucleinopathies, since RBD represents an early prodromal stage of synucleinopathy when neuropathology may be more responsive to treatment. While clonazepam and melatonin are most commonly used as symptomatic treatments for RBD, clinical trials of symptomatic treatments are also needed to identify evidence-based treatments. A comprehensive framework for both disease-modifying and symptomatic treatment trials in RBD is described, including potential treatments in the pipeline, cost-effective participant recruitment and selection, study design, outcomes and dissemination of results. For disease-modifying treatment clinical trials, the recommended primary outcome is phenoconversion to an overt synucleinopathy, and stratification features should be used to select a study population at high risk of phenoconversion, to enable more rapid clinical trials. For symptomatic treatment clinical trials, objective polysomnogram-based measurement of RBD-related movements and vocalisations should be the primary outcome measure, rather than subjective scales or diaries. Mobile technology to enable objective measurement of RBD episodes in the ambulatory setting, and advances in imaging, biofluid, tissue, and neurophysiological biomarkers of synucleinopathies, will enable more efficient clinical trials but are still in development. Increasing awareness of RBD among the general public and medical community coupled with timely diagnosis of these diseases will facilitate progress in the development of therapeutics for RBD and associated neurodegenerative disorders.

show abstract

“…In addition, there is no treatment available to prevent or delay the onset of α‐synucleinopathies and thus the information lacks actionability 26,27,29‐31 . On the other hand, disclosure of risk information may be in line with the principles of beneficence and respect for autonomy, as awareness of the risk of α‐synucleinopathies could lead to an earlier recognition of α‐synucleinopathy symptoms and earlier symptomatic treatment 26,27,29 may allow for participation in neuroprotective trials 26,27 and could help future life and care planning 26‐28 . Also, proactive disclosure of risk information is considered best for the patient–physician relationship 26,28,29 …”

Section: Ethical Considerationsmentioning

confidence: 99%

“…The foundational medical–ethical principles of nonmaleficence, beneficence, and respect for autonomy are often used to discuss risk disclosure dilemmas when informing patients on an RBD diagnosis 26‐29 . Disclosure of risk information runs counter to the principle of nonmaleficence, as it may cause anxiety and distress.…”

Section: Ethical Considerationsmentioning

confidence: 99%

“…The risk should be communicated in a safe environment, and the physician should emphasize the uncertainty of the information for the individual. However, it is still under debate at which stage in the diagnostic process the risk should be disclosed and if the risk should be disclosed to patients with isolated REM sleep without atonia 28,31 . Moreover, little is known about what patients with RBD prefer to know 27,32 …”

Section: Ethical Considerationsmentioning

confidence: 99%

See 1 more Smart Citation

Ethical Considerations in Screening for Rapid Eye Movement Sleep Behavior Disorder in the General Population

et al. 2020

View full text Add to dashboard Cite

A BS TRACT: Clinical studies have shown that up to 90% of patients with idiopathic rapid eye movement sleep behavior disorder (RBD) will eventually be diagnosed with a clinical α-synucleinopathy. Because of this high conversion rate, screening for RBD is often performed to identify eligible participants for studies aimed at elucidating the prodromal phase of α-synucleinopathies. However, screening for RBD, especially in the general population, raises many ethical dilemmas. In light of the existing ethical literature and our experience in establishing a screening approach for RBD in the Rotterdam Study, we discuss ethical dilemmas when screening for RBD in population-based studies. We conclude that informing study participants about the reason for invitation and the possible trajectory that lies ahead when participating is essential. However, participants should not be troubled unnecessarily by giving them detailed information about possible diagnoses or associated disease risks.

show abstract

Prognostic Counseling for Patients With Idiopathic/Isolated REM Sleep Behavior Disorder: Should We Tell Them What's Coming? Yes

Cited by 15 publications

References 15 publications

Motor Dysfunction in REM Sleep Behavior Disorder: A Rehabilitation Framework for Prodromal Synucleinopathy

Motor Dysfunction in REM Sleep Behavior Disorder: A Rehabilitation Framework for Prodromal Synucleinopathy

Clinical trials in REM sleep behavioural disorder: challenges and opportunities

Ethical Considerations in Screening for Rapid Eye Movement Sleep Behavior Disorder in the General Population

Contact Info

Product

Resources

About