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. 2018 Nov 27;19(1):115.
doi: 10.1186/s10194-018-0946-z.

My Migraine Voice survey: a global study of disease burden among individuals with migraine for whom preventive treatments have failed

Paolo Martelletti  1   2 , Todd J Schwedt  3 , Michel Lanteri-Minet  4 , Rebeca Quintana  5 , Veruska Carboni  6 , Hans-Christoph Diener  7 , Elena Ruiz de la Torre  8 , Audrey Craven  9 , Annette Vangaa Rasmussen  10 , Simon Evans  11 , Annik K Laflamme  12 , Rachel Fink  12 , Donna Walsh  13 , Paula Dumas  14 , Pamela Vo  12
Affiliations

My Migraine Voice survey: a global study of disease burden among individuals with migraine for whom preventive treatments have failed

Paolo Martelletti et al. J Headache Pain. .

Abstract

Background: Migraine is associated with many debilitating symptoms that affect daily functioning. My Migraine Voice is a large global cross-sectional study aimed at understanding the full burden and impact of migraine directly from patients suffering from ≥4 monthly migraine days (MMDs) with a history of prophylactic treatment failure.

Methods: This study was conducted worldwide (31 countries across North and South Americas, Europe, the Middle East and Northern Africa, and the Asia-Pacific region) using an online survey administered to adults with migraine who reported ≥4 MMDs in the 3 months preceding survey administration, with pre-specified criteria of 90% having used preventive migraine treatment (80% with history of ≥1 treatment failure). Prophylactic treatment failure was defined as a reported change in preventive medication by individuals with migraine for any reason, at least once.

Results: In total, 11,266 individuals participated in the survey. Seventy-four percent of the participants reported spending time in darkness/isolation due to migraine (average: 19 h/month). While 85% of all respondents reported negative aspects of living with migraine (feeling helpless, depressed, not understood), sleeping difficulties (83%), and fear of the next attack (55%), 57% shared ≥1 positive aspect (learning to cope, becoming a stronger person). Forty-nine percent reported feeling limited in daily activities throughout all migraine phases. Migraine impact on professional, private, or social domains was reported by 87% of respondents (51% in all domains). In the previous 12 months, 38% of respondents had visited the emergency department (average: 3.3 visits), whereas 23% stayed in hospital overnight (average: 3.2 nights) due to migraine.

Conclusions: The burden of migraine is substantial among this cohort of individuals with at least 4 migraine days per month and for whom at least 1 preventive migraine treatment had failed. Interestingly, respondents reported some positive aspects in their migraine journey; the greater resilience and strength brought on by coping with migraine suggests that if future treatments could address existing unmet needs, these individuals with migraine will be able to maximize their contribution to society.

Keywords: Burden; Global survey; Migraine; Migraine experience; Work productivity.

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Conflict of interest statement

  1. Todd Schwedt receives research funding from the National Institutes of Health, the U.S. Department of Defense, the Patient Centered Outcomes Research Institute, the American Migraine Foundation, Arizona State University, and the Mayo Clinic. He serves as a consultant or on advisory boards for Alder, Allergan, Amgen, ATI, Aural Analytics, Avanir, Eli Lilly, the International Concussion Society, Ipsen Bioscience, Nocira, Novartis, Promius Pharma, Second Opinion, Teva. He is on the Board of Directors for the American Headache Society and the International Headache Society.

  2. Michel Lanteri-Minet receives research funding from the Direction Générale de la Santé, the Agence Nationale de Sécurité des Médicaments, the Société Française de la Douleur, the Fondation Apicil, the Migraine Foundation. He serves as a consultant or on advisory boards for Allergan, Amgen, Astellas, ATI, BMS, Boehringer, Boston Scientific, CoLucid, Convergence, Glaxo-SmithKline, Grunenthal, Lilly, Medtronic, Menarini, MSD, Novartis, Pfizer, ReckittBenckiser, Saint-Jude, Sanofi-Aventis, Teva, UCB, Zambon.

  3. Rebeca Quintana and Veruska Carboni are employees of GfK Health

  4. Hans-Christoph Diener received honoraria for participation in clinical rials, contribution to advisory boards or oral presentations from: Addex Pharma, Alder, Allergan, Almirall, Amgen, Autonomic Technology, AstraZeneca, Bayer Vital, Berlin Chemie, Böhringer Ingelheim, Bristol-Myers Squibb, Chordate, Coherex, CoLucid, Electrocore, GlaxoSmithKline, Grünenthal, Ipsen, Janssen-Cilag, Labrys Biologicals, Lilly, La Roche, 3 M Medica, Medtronic, Menerini, Minster, MSD, Neuroscore, Novartis, Johnson & Johnson, Pierre Fabre, Pfizer, Schaper and Brümmer, Sanofi, St. Jude, Teva and Weber & Weber. Financial support for research projects was provided by Allergan, Almirall, AstraZeneca, Bayer, Electrocore, GSK, Janssen-Cilag, MSD and Pfizer. Headache research at the Department of Neurology in Essen is supported by the German Research Council (DFG), the German Ministry of Education and Research (BMBF) and the European Union. H.C. Diener has no ownership interest and does not own stocks of any pharmaceutical company. HCD serves on the editorial boards of Cephalalgia and Lancet Neurology. HCD chairs the Clinical Guidelines Committee of the German Society of Neurology and is member of the Clinical Trials Committee of the IHS.

  5. Paolo Martelletti received funds for research, education, advisory boards and editorial activity from ACRAF Angelini, Allergan, Amgen, Electrocore, Novartis, Teva, Springer HealthCare, SpringerNature. He received travel reimbursement from SpringerNature, European Medicine Agency and royalties from Springer. He is President of European Headache Federation and serves as Editor-in-Chief of The Journal of Headache and Pain, Section Editor, Medicine of SpringerNature Comprehensive Clinical Medicine, Editorial Board Member of Internal and Emergency Medicine and of International Journal of Environmental Research and Public Health. He has no ownership interest and does not own stocks of any drug company.

  6. Elena Ruiz de la Torre is President of the European Headache Alliance.

  7. Audrey Craven is President of the Migraine Association of Ireland

  8. Annette Vangaa Rasmussen is a member of the Novartis Advisory Board

  9. Simon Evans is Chief Executive of Migraine Action which receives funding from Allergan, Novartis, RB, electroCore, BHR Pharmaceuticals, MAC Clinical Research, Norville Group

  10. Donna Walsh is Executive Director of the European Federation of Neurological Associations which receives grants from a consortia of pharmaceutical companies. In 2017, EFNA funding was provided by the following companies: MSD, Merck, Genzyme, Teva, Biogen, UCB, Pfizer, Grunenthal, Janssen, European Academy of Neurology. In a personal capacity, she has been reimbursed for participation on advisory/steering committees organized by Pfizer and Novartis

  11. Paula K. Dumas is on the Board of the American Migraine Foundation and the Steering Committee of Coalition of Headache and Migraine Patients. She has an equity interest in Migraine Again LLC and Migraine Health Ventures

  12. Annik K. Laflamme, Rachel Fink, and Pamela Vo are Novartis employees.

Figures

Fig. 1
Fig. 1
The My Migraine Voice Study Population Accrued per Applied Criteria. *Predetermined quotas
See this image and copyright information in PMC

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