Dataset Information

Continuous Monitoring of Essential Tremor: Standards and Challenges.

ABSTRACT:

Background

The value of continuous symptom monitoring in people with essential tremor is uncertain.

Objectives

To determine the relationship between tremor amplitude measured with wearable inertial sensors and clinician- and patient-rated measures.

Methods

For 14 days, patients (1) wore inertial sensors on both wrists, (2) self-rated their tremor using a diary, (3) drew spirals, and (4) completed an activities of daily living scale once daily. Patients were also scored using The Essential Tremor Rating Scale (TETRAS) performance in the clinic by a clinician.

Results

We found strong correlations in patient-reported metrics of tremor, but weak correlations between these data and both the inertial sensor data and the in-clinic TETRAS scores.

Conclusions

The patient experience of tremor during normal daily activities may differ from the transducer-based measures of tremor amplitude and rating scales of tremor severity. Future studies should consider how to record features of tremor that are important to patients.

SUBMITTER: McGurrin P

PROVIDER: S-EPMC9631851 | biostudies-literature | 2022 Nov

REPOSITORIES: biostudies-literature

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Publications

Continuous Monitoring of Essential Tremor: Standards and Challenges.

McGurrin Patrick P McNames James J Haubenberger Dietrich D Hallett Mark M

Movement disorders clinical practice 20220918 8

<h4>Background</h4>The value of continuous symptom monitoring in people with essential tremor is uncertain.<h4>Objectives</h4>To determine the relationship between tremor amplitude measured with wearable inertial sensors and clinician- and patient-rated measures.<h4>Methods</h4>For 14 days, patients (1) wore inertial sensors on both wrists, (2) self-rated their tremor using a diary, (3) drew spirals, and (4) completed an activities of daily living scale once daily. Patients were also scored usin ...[more]

PMID: 36339317

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Project description:The field of essential tremor (ET) genetics remains extremely challenging. The relative lack of progress in understanding the genetic etiology of ET, however, does not reflect the lack of a genetic contribution, but rather, the presence of substantial phenotypic and genotypic heterogeneity. A meticulous approach to phenotyping is important for genetic research in ET. The only tool for phenotyping is the clinical history and examination. There is currently no ET-specific serum or imaging biomarker or defining neuropathological feature (e.g., a protein aggregate specific to ET) that can be used for phenotyping, and there is considerable clinical overlap with other disorders such as Parkinson's disease (PD) and dystonia. These issues greatly complicate phenotyping; thus, in some studies, as many as 30-50% of cases labeled as "ET" have later been found to carry other diagnoses (e.g., dystonia, PD) rather than ET. A cursory approach to phenotyping (e.g., merely defining ET as an "action tremor") is likely a major issue in some family studies of ET, and this as well as lack of standardized phenotyping across studies and patient centers is likely to be a major contributor to the relative lack of success of genome wide association studies (GWAS). To dissect the genetic architecture of ET, whole genome sequencing (WGS) in carefully characterized and well-phenotyped discovery and replication datasets of large case-control and familial cohorts will likely be of value. This will allow specific hypotheses about the mode of inheritance and genetic architecture to be tested. There are a number of approaches that still remain unexplored in ET genetics, including the contribution of copy number variants (CNVs), 'uncommon' moderate effect alleles, 'rare' variant large effect alleles (including Mendelian and complex/polygenic modes of inheritance), de novo and gonadal mosaicism, epigenetic changes and non-coding variation. Using these approaches is likely to yield new ET genes.

Project description:Essential tremor (ET) is among the most common neurological diseases and it often runs in families. How knowledgeable ET patients and their families are about their disease has been the subject of surprisingly little scholarship.To fill this gap in knowledge, we administered a comprehensive 32-item survey (i.e., questions about etiology, pathophysiology, symptoms and signs, natural history, and treatments) to 427 participants, including 76 ET probands, 74 affected relatives (AFRs), 238 unaffected relatives, and 39 spouses of unaffected relatives, all of whom were participating in two ET family studies. We hypothesized that there would be gaps in knowledge about ET and furthermore, that probands and AFRs would be the most knowledgeable, followed by unaffected relatives and then spouses of unaffected relatives, who would be the least knowledgeable.Overall, ET patients lacked knowledge about their disease. Nearly one-third of probands answered "yes" or "do not know" to the question, "is ET the same or different from the type of tremor that many normal people can get when they become old and frail?" A similar proportion did not know whether children could get ET or they responded "no." Nearly one-fourth of affecteds (i.e., probands and AFRs) did not know whether or to what degree (e.g., very well, moderately well, not well) the symptoms of ET could be medically controlled, and 38.0% either reported that there was no brain surgery for ET or reported that they did not know. Nearly 17% of affecteds did not endorse genes as a cause for ET, which was surprising given the fact that this was a family study of ET. Probands and AFRs were the most knowledgeable, followed by unaffected relatives. Spouses of unaffected relatives were the least knowledgeable.We targeted a large group of ET patients and their families, as this group is perhaps most likely to be informed about the disease. ET patients and their AFRs were more knowledgeable about the features of ET than their family members without ET. Overall, however, knowledge of ET was very limited and this lack of knowledge encompassed all aspects of the disease including its underlying causes, the nature of the symptoms and signs, its natural history and its treatment. Further ET awareness education and programs targeting both families of ET patients and the public would help alleviate this gap in knowledge.

Dataset Information

Continuous Monitoring of Essential Tremor: Standards and Challenges.

Background

Objectives

Methods

Results

Conclusions

Publications

Continuous Monitoring of Essential Tremor: Standards and Challenges.

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