ArticleThe journal of headache and pain2025
Overview of migraine care, impact of the disease, and patient experience in France through patient voices: a cross-sectional and participatory survey study.
Article in The journal of headache and pain, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
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Who cites it
2 citing papers in PubMed.
- Trends in the Disease Burden of Migraine Among Women of Reproductive Age (15-49 Years) in Low- and Middle-Income Countries, 1990-2023.International journal of women's health · 2026Article
- Evolving care pathways for women with migraine in Italy: results from a national survey.Frontiers in neurologyArticle
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Authors and funding
7 authors.
Funding
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Abstract
backgroundThis study aims to improve the understanding of the patient journey via the perspectives of patients with migraine.
methodsThe 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.
resultsOut 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.
conclusionPatients 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.
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