Andre Laura, Cavers Debbie
Health in Mind, Edinburgh, UK.
Medical School, The University of Edinburgh, Edinburgh, UK.
Br J Pain. 2021 Nov;15(4):420-428. doi: 10.1177/2049463720976695. Epub 2020 Dec 2.
Cluster headache is a rare primary headache disorder said to be one of the most painful conditions in existence. Limited evidence demonstrates cluster headache patients have difficulties securing a diagnosis and poor access to services. There is a gap in research around psychosocial needs, meaning there are no evidence-based guidelines to inform optimal management of this patient group in primary care.
The aim of this study is to explore the perspectives of cluster headache patients in the United Kingdom in order to suggest ways their care can be improved.
It is an in-depth qualitative study involving telephone interviews with 15 participants with either chronic or episodic cluster headache. Semi-structured interviews (43-58 minutes) were conducted, recorded and transcribed verbatim. Two researchers conducted thematic analysis to identify themes.
Participants described the impact cluster headache has on their quality of life. They also felt the legitimacy of their disorder was questioned. This situation was often exacerbated by a reported lack of awareness among General Practitioners (GPs), which negatively impacted their care in terms of diagnosis and access to treatments and specialists. They attempted to control the pain through treatments and avoiding triggers, often with detrimental consequences for their social contact and mental health.
Findings indicate the need to improve the lived experience of cluster headache patients in two key areas: (1) raising awareness of the disorder and its impact among GPs, and (2) extending care beyond clinical treatment provision, supporting patients in self-management and addressing its psychosocial impact, with implications for the management of this group in primary care.
丛集性头痛是一种罕见的原发性头痛疾病，据说也是现存最痛苦的病症之一。有限的证据表明，丛集性头痛患者在获得诊断方面存在困难，且获得服务的机会不佳。围绕心理社会需求的研究存在空白，这意味着缺乏基于证据的指南来指导基层医疗中该患者群体的最佳管理。
本研究的目的是探索英国丛集性头痛患者的观点，以提出改善其护理的方法。
这是一项深入的定性研究，包括对15名患有慢性或发作性丛集性头痛的参与者进行电话访谈。进行了半结构化访谈（43 - 58分钟），并进行录音和逐字转录。两名研究人员进行了主题分析以确定主题。
参与者描述了丛集性头痛对其生活质量的影响。他们还感到自己疾病的合理性受到质疑。这种情况常常因全科医生（GP）报告的认识不足而加剧，这在诊断以及获得治疗和专科医生方面对他们的护理产生了负面影响。他们试图通过治疗和避免触发因素来控制疼痛，这往往对他们的社交联系和心理健康产生不利影响。
研究结果表明，需要在两个关键领域改善丛集性头痛患者的生活体验：（1）提高全科医生对该疾病及其影响的认识；（2）将护理范围扩展到临床治疗之外，支持患者进行自我管理并解决其心理社会影响，这对基层医疗中该群体的管理具有启示意义。
