Vikelis Michail, Kourlaba Georgia, Barba Lia, Bilias Konstantinos, Barbalia Elena, Solakidi Argyro, Trafalis Dimitrios, Lioliou Katerina, Zyga Sofia, Karapanayiotides Theodoros, Mitsikostas Dimos-Dimitrios
Headache Clinic, Mediterraneo Hospital, Glyfada, Greece.
Department of Nursing, Faculty of Health Sciences, University of the Peloponnese, Tripoli, Greece.
Front Neurol. 2025 Feb 24;16:1558014. doi: 10.3389/fneur.2025.1558014. eCollection 2025.
Migraine is a chronic, debilitating neurological disease affecting more than 1 billion patients, worldwide. Even though migraines are not life-threatening, they have profound effects on individuals, families, and society.
The aim of this study was to describe patients' perspectives on socioeconomic and humanistic burden of migraine, as well as the unmet medical needs in the clinical management of migraine, in Greece.
A mixed study design of a Delphi panel and a focus group was conducted, in which 16 and 9 episodic migraine patients from the two Greek migraine patient associations participated, respectively. A structured questionnaire of 45 statements regarding burden of disease diagnosis, treatment and unmet needs was used to collect data at Delphi consensus panel. An open and balanced discussion with all participants took place, under the co-ordination of one moderator during the focus group. At each round of the Delphi panel, the percentage of participants who responded "Agree/Strongly Agree," "Disagree/Strongly disagree" and "Neither Agree nor Disagree" was calculated. The consensus threshold was set at 70% of responses. A thematic analysis was performed for the focus group.
Consensus was achieved on 34 out of 45 statements. Thematic analysis revealed that patients face severe problems at work due to a lack of understanding and awareness of migraine burden from colleagues and employees, they are forced to modify their daily activities to avoid migraine attacks, and they experience prolonged diagnostic and treatment journey since they visit different medical specialties until they find the one who will be able to effectively help them manage their migraine. Additionally, they expressed concerns regarding the management of their disease due to patient-physician communication gap, dissatisfaction with traditional oral preventive therapies and lack of therapeutic options for older ages and in case of existence of specific comorbidities.
Participants agreed that Migraine has a multifaceted impact on several aspects of patients' lives. Patient-centered care, better training for healthcare providers, targeted therapies, and improved communication tools emerged as key factors in addressing the unmet medical needs of migraine sufferers.
偏头痛是一种慢性、使人衰弱的神经系统疾病,全球有超过10亿患者受其影响。尽管偏头痛不会危及生命,但它对个人、家庭和社会都有深远影响。
本研究旨在描述希腊患者对偏头痛的社会经济和人文负担的看法,以及偏头痛临床管理中未满足的医疗需求。
采用德尔菲小组和焦点小组的混合研究设计,分别有来自希腊两个偏头痛患者协会的16名发作性偏头痛患者和9名患者参与。在德尔菲共识小组中,使用一份包含45条关于疾病诊断、治疗负担和未满足需求的结构化问卷来收集数据。在焦点小组期间,在一名主持人的协调下,与所有参与者进行了开放且平衡的讨论。在德尔菲小组的每一轮中,计算回答“同意/强烈同意”“不同意/强烈不同意”和“既不同意也不不同意”的参与者百分比。共识阈值设定为70%的回答。对焦点小组进行了主题分析。
45条陈述中有34条达成了共识。主题分析表明,由于同事和雇主对偏头痛负担缺乏理解和认识,患者在工作中面临严重问题,他们被迫改变日常活动以避免偏头痛发作,并且由于他们要去看不同的医学专科,直到找到能够有效帮助他们管理偏头痛的医生,所以他们经历了漫长的诊断和治疗过程。此外,由于医患沟通差距、对传统口服预防性疗法的不满以及老年患者和存在特定合并症情况下缺乏治疗选择,他们对疾病管理表示担忧。
参与者一致认为偏头痛对患者生活的多个方面有多方面影响。以患者为中心的护理、对医疗保健提供者的更好培训、靶向治疗以及改进的沟通工具是解决偏头痛患者未满足的医疗需求的关键因素。