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

Rapid eye movement (REM) sleep behavior disorder (RBD) is characterized by often violent dream enactment behavior, such as sleep-related vocalization, screaming or shouting, punching, arm flailing, or kicking movements, that parallel the content of a nightmare or vivid dream. Diagnosis requires confirmation by polysomnography (PSG), which demonstrates its neurophysiological signature of REM sleep atonia loss (a.k.a., REM sleep without atonia). iRBD has been recently demonstrated to be a common neurological disorder in the general population with a prevalence of approximately 1% to 2%. Whether RBD is idiopathic/isolated (iRBD) or symptomatic, RBD is strongly associated with synucleinopathy neurodegenerative disorders, including Parkinson’s disease (PD), dementia with Lewy bodies (DLB), and MSA. Even iRBD is strongly associated with symptoms or signs of an underlying covert syncleinopathy, with up to 80% of iRBD patients having nonmotor manifestations of autonomic, cognitive, olfactory, or visual manifestations, or “soft” motor signs insufficient for PD diagnosis of bradykinesia, rigidity, tremor, or postural instability at the time of diagnosis by PSG. Approximately 70% of iRBD patients develop PD, DLB, or MSA over longitudinal follow-up of 10 to 15 years, and currently there is no proven beneficial neuroprotective strategy or therapy to prevent the evolution of increasingly devastating neurological deficits. Given this, there is currently prevailing uncertainty about the utility of prognostic counseling for iRBD patients, who are at high risk for future development of a neurodegenerative disorder. Should we tell them about their likely future, and if so, what should we tell them? Prognostic counseling in iRBD is further complicated by how the patient presents and is given the diagnosis. In between 50% to 60% of patients, dream enactment is not the patient’s primary clinical complaint or concern in the sleep clinic, given that they may instead first present for concerns related to obstructive sleep apnea, restless legs syndrome, hypersomnia symptoms, or chronic insomnia. Previous research suggests that sleep clinic populations are unsurprisingly enriched for the discovery of iRBD, with approximately 5% of sleep clinic cohorts having an iRBD diagnosis. In another recent study, 11% of patients had another presenting primary sleep complaint and RBD diagnosis was elicited only upon specific questioning, whereas 44% of patients in this cohort were unaware of their dream enactment behaviors. These data are consistent with our clinical experience in sleep medicine clinics where RBD is commonly discovered in the history taking process, by screening questionnaires, or even as a secondary and incidental finding during PSG indicated for another primary sleep concern. As such, not all iRBD patients receiving a diagnosis are aware of their dream enactment; many do not consider it a significant concern in their daily lives and are less likely to be seeking prognostic information. For these patients, relaying bad news is much more difficult than if the patient had a primary focus on their dream enactment as a chief complaint. Despite this differential presentation, recent evidence suggests that iRBD as a primary/chief or secondary complaint follows a similarly poor prognostic trajectory toward acquiring overt neurodegenerative disease. Currently, there are limited data concerning prognostic counseling of RBD patients. In one recent study, only 47% of adults with iRBD received prognostic counseling (or, at least, documentation concerning counseling), and male neurologists were most likely to have documented counseling in the electronic medical record. A more recent study of worldwide experts found that most RBD subspecialty experts provided prognostic counseling, but few asked patients their views concerning their preferences. There are currently no published studies concerning iRBD patient preferences regarding prognostic counseling.