International online survey of 1048 individuals with functional neurological disorder

International online survey of 1048 individuals with functional neurological disorder
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DOI:
10.1111/ene.15018
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发表时间:
2021-08-05
影响因子:
5.1
通讯作者:
Nicholson, Timothy
Nicholson, Timothy
中科院分区:
医学3区
文献类型:
--
作者:
Butler, Matthew;Shipston-Sharman, Oliver;Nicholson, Timothy

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背景和目的功能性神经障碍(FND)是一种常见的神经系统疾病,症状严重.目前还没有关于FND患者经历的国际大规模研究。方法设计患者问卷,评估FND患者特征、症状合并症和疾病感知。受访者是通过社交媒体和患者群体的开放式访问问卷在国际上招募的,为期一个月。结果共有来自16个国家的1048名受访者参与。平均年龄为42岁(86%为女性)。FND症状持续时间的中位数为5年,从首次症状到诊断的中位数为2年。当前症状(核心FND和相关)的平均数量为9.9。许多受访者有相关症状,例如疲劳(93%),记忆困难(80%)和头痛(70%)。自我报告的精神共病相对常见(抑郁,43%;焦虑,51%;恐慌,20%;创伤后应激障碍,22%)。大多数答复者报告说,FND有多种原因,包括生理和心理原因。结论这项大型调查进一步证明FND患者通常有高水平的多种症状合并症,并由此产生痛苦。它也支持这样的观点,即相关的身体症状在FND患者中具有特别的临床意义。FND的二元论观点不受受访者的支持,他们通常倾向于将这种疾病概念化为心灵和大脑的界面。需要一个广泛的方法,这个服务差的病人群体的突出。由于在线调查的分布(主要是通过FND患者群体),潜在的选择和响应偏差是一个关键的限制。
Background and purpose Functional neurological disorder (FND) is common, and symptoms can be severe. There have been no international large-scale studies of patient experiences of FND. Methods A patient questionnaire was created to assess FND patient characteristics, symptom comorbidities and illness perceptions. Respondents were recruited internationally through an open access questionnaire via social media and patient groups over a month-long period. Results In total, 1048 respondents from 16 countries participated. Mean age was 42 years (86% female). Median FND symptom duration was 5 years, and median time from first symptom to diagnosis was 2 years. Mean number of current symptoms (core FND and associated) was 9.9. Many respondents had associated symptoms, for example fatigue (93%), memory difficulties (80%) and headache (70%). Self-reported psychiatric comorbidities were relatively common (depression, 43%; anxiety, 51%; panic, 20%; and post-traumatic stress disorder, 22%). Most respondents reported that FND had multiple causes, including physical and psychological. Conclusions This large survey adds further evidence that people with FND typically have high levels of multiple symptom comorbidity with resultant distress. It also supports the notion that associated physical symptoms are of particular clinical significance in FND patients. Dualistic ideas of FND were not supported by respondents, who generally preferred to conceptualize the disorder as one at the interface of mind and brain. The need for a broad approach to this poorly served patient group is highlighted. Potential selection and response biases due to distribution of the survey online, mostly via FND patient groups, are a key limitation.