Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK.
Royal Surrey County Hospital NHS Foundation Trust, Guildford, UK.
Eur J Neurol. 2021 Nov;28(11):3591-3602. doi: 10.1111/ene.15018. Epub 2021 Aug 5.
Functional neurological disorder (FND) is common, and symptoms can be severe. There have been no international large-scale studies of patient experiences of FND.
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.
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.
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.
功能性神经障碍(FND)较为常见,且症状可能较为严重。目前尚未有针对 FND 患者体验的国际大规模研究。
我们创建了一份患者问卷,以评估 FND 患者的特征、症状合并症和疾病认知。通过在社交媒体和患者群体中进行为期一个月的公开访问问卷调查,我们在国际范围内招募了受访者。
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 症状的平均持续时间为 5 年,从首次出现症状到确诊的平均时间为 2 年。目前的平均症状数(核心 FND 和相关症状)为 9.9。许多受访者有相关症状,例如疲劳(93%)、记忆力困难(80%)和头痛(70%)。自我报告的精神共病较为常见(抑郁,43%;焦虑,51%;惊恐,20%;创伤后应激障碍,22%)。大多数受访者认为 FND 有多种原因,包括身体和心理方面的原因。
这项大型调查进一步证明,FND 患者通常有多种症状合并症,导致其痛苦程度较高。它还支持这样一种观点,即相关的身体症状在 FND 患者中具有特殊的临床意义。受访者不支持将 FND 视为二元论的观点,他们通常更倾向于将这种疾病概念化为一种介于身心之间的疾病。这凸显了为这一服务不足的患者群体提供广泛治疗方法的必要性。由于该调查是在线分发的,主要通过 FND 患者群体,存在选择和回应偏倚,这是一个关键的局限性。