Overview of migraine care, impact of the disease, and patient experience in France through patient voices: a cross-sectional and participatory survey study.
Anne Duburcq, Manon Molins, Sabine Debremaeker, Julie Joie, Luna Lopes, Camille Nevoret, Olivia Begasse de Dhaem
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Abstract
Background: This study aims to improve the understanding of the patient journey via the perspectives of patients with migraine.
Methods: The questionnaire was created by patients. It was based on the experiences of 24 patients with migraine and 4 members of the patient advocacy organization La Voix des Migraineux. Two focus groups were held to assess the various dimensions of the patient journey. This survey was accessible on the MoiPatient online platform between March 19th and May 17th, 2022.
Results: Out of the 683 participants (average age: 41.8 years; female: 92.4%; average age at first migraine attack: 16.2 years), 95.9% had received a formal migraine diagnosis from a physician. Migraine had a significant impact on most participants (96.0% had a severe HIT-6 score and 70.7% had severe disability on the MIDAS). Unmet patients' needs highlighted in this study included diagnosis delay (mean 7.5 years), treatment delay, limited access to neurologists and/or headache specialists, long trial-and-error process of different medications (participants had tried an average of 5.6 acute treatments and 5.0 preventive treatments), numerous (7.2 side effects per participants on average) and often inadequately addressed side effects, suboptimal patient education, and the need for a therapeutic, empathic, and supportive relationship between patients and healthcare professionals. Participants had a negative perception of the care journey and experience with healthcare professionals: 36.2% described their care journey as an uphill battle ("parcours du combatant"). More than half of patients did not feel heard nor supported by healthcare professionals.
Conclusion: Patients with migraine have to face a multitude of complex obstacles trying to get the care they deserve. The burden of disease is amplified by the complexity of the migraine patient's journey, both in terms of diagnosis and treatment. This study highlights specific areas in need for improvement.
背景：本研究旨在通过偏头痛患者的视角来提高对患者旅程的理解。方法：由患者自行制作问卷。它是基于24名偏头痛患者和4名患者倡导组织La Voix des Migraineux成员的经历。举行了两个焦点小组，以评估患者旅程的各个方面。该调查于2022年3月19日至5月17日期间在MoiPatient在线平台上进行。结果：在683名参与者中(平均年龄：41.8岁；女:92.4%;首次偏头痛发作的平均年龄：16.2岁)，95.9%的人从医生那里得到了正式的偏头痛诊断。偏头痛对大多数参与者有显著影响（96.0%的参与者在MIDAS中有严重的HIT-6评分，70.7%的参与者有严重的残疾）。本研究强调的未满足患者的需求包括诊断延迟（平均7.5年）、治疗延迟、接触神经科医生和/或头痛专家的机会有限、不同药物的长期试错过程（参与者平均尝试了5.6种急性治疗和5.0种预防性治疗）、众多（平均每个参与者有7.2种副作用）且往往得不到充分解决的副作用、不理想的患者教育，以及对治疗性、共情、以及患者和医护人员之间的支持关系。参与者对医疗保健专业人员的护理过程和经验有负面看法：36.2%的人将他们的护理过程描述为一场艰苦的战斗（“parcours du combatant”）。超过一半的患者感觉得不到专业医护人员的倾听和支持。结论：偏头痛患者必须面对许多复杂的障碍，试图得到他们应得的治疗。在诊断和治疗方面，偏头痛患者的旅程的复杂性增加了疾病的负担。这项研究突出了需要改进的具体领域。
期刊介绍：
The Journal of Headache and Pain, a peer-reviewed open-access journal published under the BMC brand, a part of Springer Nature, is dedicated to researchers engaged in all facets of headache and related pain syndromes. It encompasses epidemiology, public health, basic science, translational medicine, clinical trials, and real-world data.
With a multidisciplinary approach, The Journal of Headache and Pain addresses headache medicine and related pain syndromes across all medical disciplines. It particularly encourages submissions in clinical, translational, and basic science fields, focusing on pain management, genetics, neurology, and internal medicine. The journal publishes research articles, reviews, letters to the Editor, as well as consensus articles and guidelines, aimed at promoting best practices in managing patients with headaches and related pain.
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