Essential tremor patients experience significant burden beyond tremor: A systematic literature review

Abstract

BackgroundEssential tremor (ET) is among the most common movement disorders in adults. While ET is diagnosed and primarily characterized by the presence of tremor, it also can impact cognition, sleep, mood, and motor functioning more broadly. The manifestations of ET can have various consequences, including difficulty with activities of daily living (ADL), embarrassment, and overall decline in health-related quality of life, which have not been fully explored in prior studies.ObjectiveWe performed a systematic literature review to comprehensively characterize the burden experienced by patients with ET from the clinical and humanistic perspectives, focusing on outcomes beyond tremor.MethodsThis systematic literature review followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Searches in PubMed, Embase, and Cochrane Library identified original, observational studies of the clinical and humanistic burden in adult patients with ET published in English between 2010 and 2020. Studies assessing epidemiology, treatment patterns, or disease management were excluded. Search results were screened according to pre-determined eligibility criteria. Data from included studies were collected, independently verified, and qualitatively synthesized.ResultsFollowing the screening of 2,303 records and 145 full-text articles, 39 studies were identified. There was significant heterogeneity in study designs, statistical approaches, and patient cohorts across the included studies. Patients with ET in these studies exhibited more severe disabilities and reduced independence compared to healthy individuals, and they often struggled to perform ADL and relied on caregivers for physical and emotional support. Patients also experienced various issues with movement and balance, increased risk of falls, depression, anxiety, poor sleep quality, and psychosocial consequences including embarrassment, apathy, and enfeeblement.ConclusionA systematic literature review of non-tremor manifestations and/or consequences of ET identified far-reaching negative impacts on patients' ability to function independently and revealed accompanying psychosocial effects, including social fear and embarrassment. The reduced function and psychosocial deficits observed in patients with ET result in significant clinical and humanistic burdens, decreasing quality of life. Future studies should evaluate this condition beyond the tremor itself to provide an improved understanding of the multi-dimensional burden of the disease, thereby highlighting the need to diagnose and appropriately manage patients with ET.

A Randomized Phase 2 KINETIC Trial Evaluating SAGE‐324/BIIB124 in Individuals with Essential Tremor

“…Gamze Kilic-Berkmen, PhD, 1 Hodam Kim, PhD, 2,3 Dongdong Chen, BA, 4 Cameron I. Yeo, BA, 1 Ashok R. Dinasarapu, PhD, 1 Laura M. Scorr, MD, 1 Woon-Hong Yeo, PhD, 2,3,5,6 David A. Peterson, PhD, 7 Hilde Williams, BA, 8 April Ruby, BA, 8 Roger Mills, MD, 8…”

“…2 The precise problem that causes dystonia in the motor network remains unknown, but it is thought to involve an imbalance between inhibition and excitation in favor of the latter. 3,4 If this is the case, then drugs that suppress neuronal excitability may have therapeutic value for dystonia.…”

“…In 2020, there were ~6.4 million U.S. adults with ET 3 . Some individuals with ET have marked levels of impairment in activities of daily living (ADLs), including writing, eating/drinking, and dressing, 4 reducing health‐related quality of life 5 . More effective oral medications are needed as about 30% to 50% of treated individuals with ET will have a suboptimal response to standard‐of‐care pharmacological treatments 6,7 …”

Depression Attenuates Caudate and Dorsolateral Prefrontal Cortex Alpha and Beta Power Response to Reward

“…We categorized subjects as depressed if their total BDI-II score was 14 or higher. 40,41 In order to evaluate specific depression symptoms, we also computed affective (encompassing mood), somatic (encompassing bodily and cognitive difficulties), and anhedonia (encompassing loss of interest and pleasure) symptom subscale scores from BDI-II items as has previously been described. [42][43][44][45] Items included in each factor are listed in Table 2.…”

Association between cognitive diagnosis and a range of significant life events in an elderly essential tremor cohort: a longitudinal, prospective analysis

“…For example, people diagnosed with ET more commonly exhibit sleep disorders, including excessive daytime somnolence than controls (7,12). They also can encounter more difficulties performing daily activities that are cognitively based (13)(14)(15) and often experience balance problems that increase their susceptibility to falls and, potentially, physical injury (16)(17)(18). Although these data suggest that ET might also be associated with a succession of additional significant life events, such as the requirement of a walking aid, the use of a home health aide, or moving to supervised living facilities, there is little research in this area (3).…”