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Neurology
影响因子:11.8 DOI:10.1212/WNL.0000000000009400
作者: Schaeffer E,Rogge A,Nieding K,Helmker V,Letsch C,Hauptmann B,Berg D 发表时间:2020-09-10 12:54:08
keywords: Schaeffer ERogge ANieding KHelmker VLetsch CHauptmann BBerg D
关键词:
Abstract
OBJECTIVE:To evaluate the point of view of patients with Parkinson disease (PD) on early detection and risk disclosure in the prodromal phase of PD and to derive recommendations for an ethical framework for the recruitment of prodromal PD cohorts. METHODS:A standardized questionnaire to evaluate the patients' perception on early diagnosis in PD was designed by an interdisciplinary study group. After testing in a preliminary feasibility study (n = 20), the survey was performed retrospectively with patients from our clinic. RESULTS:A total of 101 patients with PD answered the questions. The majority of patients reported that time from onset of motor symptoms to diagnosis was burdensome, including false diagnoses and many consultations of various medical specialists. However, most of the patients evaluated early risk disclosure with skepticism. Freedom of choice and the potential of changes in lifestyle were rated as important. CONCLUSION:Although patients with PD reported the time to diagnosis retrospectively as burdensome, the majority was skeptical regarding early disclosure of risk, especially with regard to the lack of pharmacologic options. Circumstances under which early detection and disclosure would have been approved by the majority of patients were (1) advice on lifestyle changes (exercise, nutrition) as potentially disease course-modifying therapy; (2) the establishment of an early diagnosis "culture," including early clarification of the patients' wish to know; and (3) regular support and follow-up of individuals after risk disclosure.
摘 要
期刊介绍
《NEUROLOGY》 (点击进入期刊详情)
英文简介 : As the leading clinical neurology journal worldwide, Neurology is directed to physicians concerned with diseases and conditions of the nervous system. The journal''s purpose is to advance the field by presenting new basic and clinical research with emphasis on knowledge that will influence the way neurology is practiced. The journal is at the forefront in disseminating cutting-edge, peer-reviewed information to the neurology community worldwide.
中文简介 : (来自Google、百度翻译) 作为世界领先的临床神经病学杂志,神经病学是针对医生关心的疾病和条件的神经系统。该杂志的目的是通过介绍新的基础和临床研究,强调将影响神经病学实践方式的知识,推动该领域的发展。该杂志在向全球神经病学社区传播最前沿的、同行评议的信息方面处于领先地位。
CIRCULATION RESEARCH 期刊中科院评价数据
新中科院分区
大类(学科) 小类(学科) 学科排名
医学

CLINICAL NEUROLOGY (临床神经病学)

13/197
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总被引频次 :89258

特征因子 : 0.115200

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