社區洞察報告

叢集性頭痛患者的就醫體驗與心理共病

透過患者心聲找出照護上的缺口

作者

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

MyClusters · 伊拉斯謨醫學中心

伊拉斯謨醫學中心合作計畫18 次患者訪談荷蘭

背景

關於叢集性頭痛

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

受訪者

個月

平均確診時間

8/10

疼痛評分

最低報告標準

90 min

平均持續時間

每次發作

受試者

患者人口統計資料

性別

女性 (77.8%)

男性 (22.2%)

叢集性頭痛（CH）的類型

慢性 (66.7%)

發作性 (33.3%)

診斷者

神經科醫師 (77.8%)

全科醫師 (33.3%)

年齡分佈

20–30

22.2%

31–40

38.9%

41–50

22.2%

51+

11.1%

疼痛部位

對

66.7%

左側

33.3%

兩側

11.1%

100% 的受試者將疼痛強度評定為 8/10 或更高

身體影響

軀體共病

所有受試者均表示在頭痛發作期間伴有軀體共病。發作頻率介於每日 0 至 15 次，持續時間則介於 10 至 660 分鐘之間。

94.5%

鼻塞和／或流鼻水

77.8%

疲勞

72.2%

痙攣*

66.7%

流淚的眼睛

61.1%

眼瞼下垂

Top 5 most reported items

Other items

*Cramps were reported in varying locations across participants.

發作前

已確認的誘發因素

88.9%

受試者中，有……比例能指出發作前出現的特定誘因

環境因素（例如溫度變化和季節更替）是最常被報告的誘發因素。生活方式因素（例如睡眠、飲酒和壓力）也被提及為發作前的誘發因素。

Top 3 most reported triggers

Other triggers

病患心聲

對日常功能的影響

所有受試者均表示，叢集性頭痛（CH）對其日常功能造成顯著影響，往往迫使他們必須調整生活或工作安排、持續進行藥物管理，並在社交活動及未來規劃方面受到限制。

82%

工作上的困難

47% 的受訪者表示無法工作

29%

學術影響

範圍從學業表現受損到被終止學業資格

95%

展望有所改變

由於這項診斷，他們對未來的看法發生了改變

工作與職涯

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

社會環境

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

心理症狀

94.5%

報告顯示存在焦慮，通常與對發作的恐懼有關

50%

曾報告有自殺念頭或安樂死念頭，其中部分患者甚至發展為具體的意圖

44.5%

報告中的憂鬱症狀

心理症狀的盛行率

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

醫療保健

照護缺口與病患心聲

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

主要發現

醫療專業人員之間需要加強協調

整合性、跨領域照護路徑的開發

後續門診應關注患者的日常功能及心理健康狀況

關於藥物作用機制、給藥方式及副作用的資訊不足

患者希望積極參與治療決策過程

疼痛往往被低估，或被等同於「普通頭痛」

缺乏心理支持與自我管理工具

展望

結論與建議

認識其心理影響

受試者強調，必須正視叢集性頭痛對心理造成的影響。醫療專業人員往往低估了他們的疼痛程度，這導致患者感到沮喪、恐慌和絕望。

整合式照護路徑

應建立整合性、跨領域的照護路徑，並加強醫療專業人員之間的協調。後續門診應關注患者的日常功能與心理健康，而不僅僅是發作頻率。

同理心與理解

受試者表示希望醫療人員能展現更多同理心與理解。當前亟需對此病症的嚴重性及心理負擔給予更多重視。

患者參與

倡導採取更透明的治療方案，並讓患者積極參與決策過程。受試者希望獲得更多關於藥物作用機制、給藥方式及副作用的資訊。

心理支持

研究中指出，患者有心理支持的需求，包括學習自我管理工具。超過半數的參與者透過採用更具適應性的應對策略或接受專業心理支持，情況有所改善。