社区洞察报告

丛集性头痛患者的就医体验与心理共病

通过患者心声发现护理中的不足

作者

Arzu Burak、Parmin Zolfaghari、Walaa Al Haj Ali、Azra Özsert、Anouk van der Vliet、Fleur van Loon、Darshan Ramanagoudra、Lea Jabbarian

MyClusters · 伊拉斯谟医学中心

伊拉斯谟医学中心合作项目18 例患者访谈荷兰

背景

关于丛集性头痛

Cluster headache (CH) is a rare and extremely painful form of primary headache, affecting an estimated 0.1% of the world population. It is characterised by unilateral, recurrent attacks of severe periorbital pain, often accompanied by autonomic symptoms.

Several studies suggest that CH is associated with substantial psychological comorbidity. This study explored the lived experience of patients with CH, its psychological impact, perceived shortcomings in the current healthcare trajectory, and the strategies patients use to improve their quality of life.

Semi-structured interviews were conducted with eighteen participants with a clinically confirmed diagnosis of cluster headache in the Netherlands.

患者

受访者

个月

平均确诊时间

8/10

疼痛评分

报告内容应尽可能简短

90 min

平均持续时间

每次发作

受试者

患者人口统计学特征

性别

女性 (77.8%)

男性 (22.2%)

丛集性头痛（CH）类型

慢性 (66.7%)

发作性 (33.3%)

诊断机构

神经科医生 (77.8%)

全科医生 (33.3%)

年龄分布

20–30

22.2%

31–40

38.9%

41–50

22.2%

51+

11.1%

疼痛部位

对

66.7%

左侧

33.3%

两面

11.1%

100%的受试者将疼痛强度评定为8/10或更高

身体影响

躯体共病

所有受试者均报告在头痛发作期间伴有躯体共病。发作频率为每天0至15次，持续时间为10至660分钟。

94.5%

鼻塞和/或流涕

77.8%

疲劳

72.2%

痉挛*

66.7%

流泪的眼睛

61.1%

眼睑下垂

Top 5 most reported items

Other items

*Cramps were reported in varying locations across participants.

发作前

已确认的诱因

88.9%

受试者中，有……比例的人确定了发作前存在的具体诱因

温度变化和季节更替等环境因素是最常被报告的诱因。睡眠、饮酒和压力等生活方式因素也被提及为发作前的诱因。

Top 3 most reported triggers

Other triggers

患者心声

对日常功能的影响

所有参与者均表示，丛集性头痛对其日常生活功能产生了显著影响，往往需要调整生活或工作安排，持续进行药物管理，并在社交活动及未来规划方面受到限制。

82%

工作困难

47%的受访者表示无法工作

29%

学术影响

从学业表现受损到被终止学业

95%

展望发生变化

由于这一诊断，他们对未来的看法发生了变化

工作与职业

47% reported that they were incapacitated for work
22% felt forced to change professions
Only 12% maintained employment, with substantial difficulty
Increased absenteeism and reduced work productivity were frequently mentioned

社会环境

83% felt supported by their social environment
However, a lack of full understanding was frequently reported
CH was often underestimated or equated with migraine
Common consequences of this lack of full understanding: sleep deprivation, social isolation, and anxiety

心理健康

心理症状

94.5%

报告了焦虑症状，通常与对发作的恐惧有关

50%

报告了自杀念头或安乐死念头，其中部分患者甚至发展为具体的自杀意图

44.5%

报告的抑郁症状

心理症状的患病率

Top 3 most reported symptoms

Other symptoms

56%

reported improvement over time, largely through more adaptive coping strategies or psychological support

33%

experienced worsening, often due to ineffective treatments or increasing social isolation

11%

reported a fluctuating course of psychological symptoms

医疗保健

医疗服务中的缺口与患者心声

Participants reported various shortcomings in the current treatment approach and healthcare communication. A clear need was expressed for better coordination among healthcare professionals and the development of integrated, multidisciplinary care pathways.

Many participants felt that their pain is underestimated by healthcare professionals and often equated with "regular headaches". This lack of validation contributes to frustration, panic, and despair.

78%

expressed a desire for more empathy and understanding from healthcare providers

主要发现

需要加强医疗专业人员之间的协调

综合多学科诊疗路径的开发

随访就诊应关注患者的日常生活功能和心理健康状况

关于药物作用机制、给药方式及副作用的信息不足

患者希望积极参与治疗决策

疼痛往往被低估，或被等同于“普通头痛”

缺乏心理支持和自我管理工具

Outlook

结论与建议

认识到其心理影响

受试者强调，有必要认识到丛集性头痛带来的心理影响。医疗专业人员往往低估了他们的疼痛程度，这导致患者感到沮丧、恐慌和绝望。

综合诊疗路径

制定综合性、多学科的诊疗路径，加强医疗专业人员之间的协调。随访咨询应关注患者的日常生活功能和心理健康状况，而不仅仅是发作频率。

同理心与理解

参与者表示希望医疗保健提供者能给予更多同理心和理解。亟需对该疾病的严重程度及其带来的心理负担给予更多重视。

患者参与

倡导采取更透明的治疗方案，让患者积极参与决策过程。参与者希望获得更多关于药物作用机制、给药方式及副作用的信息。

心理支持

研究中反映出对心理支持的需求，包括学习自我管理工具。超过半数的参与者通过采用更具适应性的应对策略或接受专业心理支持，症状得到了改善。