Evidence map›Paper›PMID 29434571›Full record

ArticleFrontiers in neurology2018

Knowledge about Essential Tremor: A Study of Essential Tremor Families.

Ashley D Cristal, Karen P Chen, Nora Cristina Hernandez, Pam Factor-Litvak, Lorraine N Clark, Ruth Ottman, Elan D Louis

Open access · goldAbstract read
In one paragraph

Article in Frontiers in neurology, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
0.7field-weighted citation impact, top 30% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

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.

2 · The registry

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.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed, 6 citations in OpenAlex.

  1. Article
  2. Wearable Accelerometer and Gyroscope Sensors for Estimating the Severity of Essential Tremor.IEEE journal of translational engineering in health and medicine · 2024
    Article
  3. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

7 authors at 3 institutions in 1 country.

Ashley D CristalDivision of Movement Disorders, Department of Neurology, Yale School of Medicine, Yale University, New Haven, CT, United States.
Karen P ChenDivision of Movement Disorders, Department of Neurology, Yale School of Medicine, Yale University, New Haven, CT, United States.
Nora Cristina HernandezDivision of Movement Disorders, Department of Neurology, Yale School of Medicine, Yale University, New Haven, CT, United States.
Pam Factor-LitvakDepartment of Epidemiology, Mailman School of Public Health, Columbia University, New York, NY, United States.
Lorraine N ClarkTaub Institute for Research on Alzheimer's Disease and the Aging Brain, College of Physicians and Surgeons, Columbia University, New York, NY, United States.
Ruth OttmanDepartment of Epidemiology, Mailman School of Public Health, Columbia University, New York, NY, United States.
Elan D LouisDivision of Movement Disorders, Department of Neurology, Yale School of Medicine, Yale University, New Haven, CT, United States.
Yale University · USColumbia University · USNew York State Psychiatric Institute

Funding

Yale Clinical and Translational Science Award (U Component)UL1TR001863 · NCATS · YALE UNIVERSITY · PI John H. Krystal, LUCILA OHNO-MACHADO · 2016 to 2026
$102.9M
Identification of Susceptibility Genes for Essential TremorR01NS073872 · NINDS · COLUMBIA UNIVERSITY HEALTH SCIENCES · PI CLARK, LORRAINE N, LOUIS, ELAN D · 2011 to 2019
$7.4M
Environmental Epidemiology of Essential TremorR01NS094607 · NINDS · YALE UNIVERSITY · PI LOUIS, ELAN D · 2016 to 2020
$3.9M
PATHOLOG-OMICS - ESSENTIAL TREMOR IN THE BROADER CONTEXT OF NEURODEGENERATIONR01NS088257 · NINDS · YALE UNIVERSITY · PI FAUST, PHYLLIS L, LOUIS, ELAN D · 2015 to 2019
$3.3M
in Vivo Quantification of Cerebellar GABA and NAA in Essential TremorR01NS085136 · NINDS · YALE UNIVERSITY · PI MATUSKEY, DAVID A · 2013 to 2017
$3.3M
NCATS NIH HHS UL1 TR001863NINDS NIH HHS R01 NS073872NINDS NIH HHS R01 NS085136NINDS NIH HHS R01 NS088257NINDS NIH HHS R01 NS094607
6 · The paper itself

Abstract

backgroundEssential 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.

methodsTo 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.

resultsOverall, 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.

conclusionWe 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.

Indexed as

clinicalepidemiologyessential tremorgeneticssurvey

Identifiers

PMID29434571
PMCPMC5790790
OpenAlexW2790299133

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

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.