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

DOI: https://doi.org/10.1186/s10194- 018- 0946- z

Abstract-Summary 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.

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 cri- teria 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.

Seventy-four percent of the participants reported spending time in darkness/iso-

lation due to migraine (average: 19 h/month).

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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, becom- ing a stronger person).

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 treat- ment had failed.

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.

Extended: My Migraine Voice adds to the existing literature since it includes a large number of countries, involves people with migraine meeting the ICHD-3 cri- teria, and assesses migraine burden during premonitory, headache, and postdrome phases of the migraine attack, thereby allowing for a comprehensive and truly global assessment of migraine burden.

The greater resilience and strength brought on by coping with migraine suggests that if future treatments could address their existing unmet needs, these individuals with migraine will be able to maximize their contribution to society.

Background The current understanding of migraine burden among individuals with the highest unmet needs, specifically those experiencing ≥4 monthly migraine days (MMDs) and prior prophylaxis failure, is limited.

Understanding the burden of disease in individuals with ≥4 MMDs is very important to enable physicians and/or others involved in migraine management to make well-informed decisions on appropriate preventive migraine care for these people.

No detailed assessment of the current treatment pathway, impact on work pro- ductivity, or burden associated with premonitory and postdromal phases of migraine is available in individuals experiencing ≥4 MMDs who have had previous prophy- lactic treatments that failed and continue to experience frequent migraines.

The objectives of My Migraine Voice were to assess migraine characteristics and describe the current real-world burden and impact of living with migraine from clinical, personal, and economic perspectives among adults with migraine experi- encing ≥4 MMDs. Methods This was a large, cross-sectional, multi-country online survey of adult participants (≥18 years of age) with migraine.

Screening questions to determine eligibility included a description of migraine based on the International Classification of Headache Disorders third edition (ICHD-3) criteria followed by a series of migraine symptom and characteristic questions to qualify that participants were experiencing migraine.

Prespecified quotas were applied to people reporting a history of taking a pro- phylactic medication to prevent their migraine: 90% of participants reported current

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or previous use of preventive migraine medication, of which 80% switched preven- tive treatment, and the remaining 10% were preventive treatment-naïve.

Because of limited published information on the burden before and after the

migraine attack, the survey included questions on the migraine phases.

A validated questionnaire was included in the survey to assess the impact of

migraine on work productivity and daily activities among employed respondents.

Results Migraine was also reported to cause sleeplessness by 83% of all respondents on average (86% for those with ≥2 TFs).

Of all survey respondents, 70% reported that migraine has affected their profes- sional life, which rose to 75% in the ≥2 TFs subgroup and was significantly higher than those with no TF (60%) (p < 0.05).

A majority of respondents in employment (60%) reported missing ≥1  day of work in the last month due to migraine, with an average of 4.6 working days being missed in the last month, which is consistent with the average of 4.5 working days missed due to migraine (absenteeism) measured by the WPAI questionnaire.

Paid sick days reported by respondents in employment in the last month were on average 2.4 days: 2.7 days in the ≥2 TFs subgroup vs 1.7 days in those with 1 TF (p < 0.05).

Discussion This large worldwide study of 11,266 participants constitutes the largest survey to date conducted in individuals with migraine suffering from ≥4 MMDs and focused mostly on those who previously experienced failure of migraine prevention treatments.

This study describes the personal, social, humanistic, and economic burden of migraine in detail, and for the first time, it allows quantifying the burden during dif- ferent phases of the migraine attack for individuals suffering from ≥4 MMDs with a history of prophylactic treatment.

Despite the limitations above, this study strikes a balance between the sample size needed to obtain a higher-resolution description about the burden of migraine imposed on affected individuals with the highest unmet need (≥4 MMDs) and potential caveats in generalizing its findings to all people with migraine (irrespec- tive of disease severity) resulting from the above-mentioned limitations.

Conclusions Despite challenges posed by migraine, only 9% reported receiving disability allow- ance due to their migraine.

Acknowledgement A machine generated summary based on the work of Martelletti, Paolo; Schwedt, Todd J.; Lanteri-Minet, Michel; Quintana, Rebeca; Carboni, Veruska; Diener, Hans-Christoph; Ruiz de la Torre, Elena; Craven, Audrey; Rasmussen, Annette Vangaa; Evans, Simon; Laflamme, Annik K.; Fink, Rachel; Walsh, Donna; Dumas, Paula; Vo, Pamela. 2018 in The Journal of Headache and Pain.

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Burden and attitude to resistant and refractory migraine: a survey from the European Headache Federation with the endorsement of the European Migraine & Headache Alliance