Knowledge about Essential Tremor: A Study of Essential Tremor Families.
Knowledge about Essential Tremor: A Study of Essential Tremor Families.
复制标题
DOI：
10.3389/fneur.2018.00027
复制
发表时间：
2018
影响因子：
3.4
通讯作者：
Louis ED
中科院分区：
文献类型：
--
作者：
Cristal AD;Chen KP;Hernandez NC;Factor-Litvak P;Clark LN;Ottman R;Louis ED
特发性震颤（ET）是最常见的神经系统疾病之一，它往往在家庭中运行。ET患者及其家人对他们的疾病有多了解一直是令人惊讶的少数学术研究的主题。为了填补这一知识空白，我们进行了一项全面的32项调查（即，研究对象为427名参与者，包括76名ET先证者、74名受影响亲属（AFR）、238名未受影响亲属和39名未受影响亲属的配偶，所有这些人都参加了两项ET家族研究。我们假设，将有差距的知识，ET和此外，先证者和AFR将是最有知识的，其次是未受影响的亲属，然后未受影响的亲属的配偶，谁将是最不知情的。总的来说，ET患者缺乏对疾病的了解。近三分之一的先证者回答"是"或"不知道"的问题，"ET是相同的或不同的类型的震颤，许多正常人可以得到当他们变得年老体弱？"同样比例的人不知道孩子是否会感染ET，或者他们回答“不”。近四分之一的患者（即，先证者和AFR）不知道是否或到什么程度（例如，非常好、中等好、不好）的症状可以通过药物控制，38.0%的人报告没有针对ET的脑手术或报告他们不知道。近17%的受影响者不支持基因是ET的原因，这是令人惊讶的，因为这是一项ET的家庭研究。先证者和AFR是最有知识的，其次是未受影响的亲属。未受影响的亲属的配偶是最不知情的。我们的目标是一大群ET患者及其家属，因为这群人可能最有可能被告知这种疾病。ET患者及其AFR对ET特征的了解程度高于非ET患者家属。然而，总体而言，对ET的了解非常有限，这种知识的缺乏涵盖了疾病的各个方面，包括其根本原因，症状和体征的性质，其自然史及其治疗。针对ET患者家庭和公众的进一步ET意识教育和计划将有助于缩小这一知识差距。
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.
登录
查看更多内容
影响因子：
--
作者：
Jain, Samay;Lo, Steven E.;Louis, Elan D.
通讯作者：
Louis, Elan D.
影响因子：
30.8
作者：
Stefansson H;Steinberg S;Petursson H;Gustafsson O;Gudjonsdottir IH;Jonsdottir GA;Palsson ST;Jonsson T;Saemundsdottir J;Bjornsdottir G;Böttcher Y;Thorlacius T;Haubenberger D;Zimprich A;Auff E;Hotzy C;Testa CM;Miyatake LA;Rosen AR;Kristleifsson K;Rye D;Asmus F;Schöls L;Dichgans M;Jakobsson F;Benedikz J;Thorsteinsdottir U;Gulcher J;Kong A;Stefansson K
通讯作者：
Stefansson K
影响因子：
8.6
作者：
Watner, D;Jurewicz, EC;Louis, ED
通讯作者：
Louis, ED
影响因子：
3.4
作者：
Shalaby S;Indes J;Keung B;Gottschalk CH;Machado D;Patel A;Robakis D;Louis ED
通讯作者：
Louis ED
影响因子：
5.2
作者：
Liu, Xinmin;Hernandez, Nora;Clark, Lorraine N.
通讯作者：
Clark, Lorraine N.