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The global burden of neurological disorders is substantial and increasing, especially in low-resource settings. The current increased global interest in brain health and its impact on population wellbeing and economic growth, highlighted in the World Health Organization’s new Intersectoral Global Action Plan on Epilepsy and other Neurological Disorders 2022–2031, presents an opportunity to rethink the delivery of neurological services. In this Perspective, we highlight the global burden of neurological disorders and propose pragmatic solutions to enhance neurological health, with an emphasis on building global synergies and fostering a ‘neurological revolution’ across four key pillars — surveillance, prevention, acute care and rehabilitation — termed the neurological quadrangle. Innovative strategies for achieving this transformation include the recognition and promotion of holistic, spiritual and planetary health. These strategies can be deployed through co-design and co-implementation to create equitable and inclusive access to services for the promotion, protection and recovery of neurological health in all human populations across the life course.

Background The care and management of migraine/headache patients in the Republic of Ireland over the last 25 years are summarized in this article. Methods Collaboration between voluntary patient organizations (the Migraine Association of Ireland or MAI), primary care services, and hospital/community shared healthcare professionals (most notably the headache specialist nurse), is highlighted as one of the key features of this management strategy in an underfunded and under-resourced public healthcare system. Conclusion The migraine/headache community in Ireland is small, but they have been dedicated in their commitment to improving care for their patients for more than 2 decades. As a result, they have been successful in recent years, both nationally and internationally, in terms of financial funding and support for their multidisciplinary and collaborative approach.

Background Migraine is a highly prevalent, disabling, misunderstood, underdiagnosed, and undertreated neurological disease. It is a leading cause of productivity loss in the workplace. Methods This is the first large-scale company-wide headache education and evaluation program in the workplace. Results 73,432 (90.5%) Fujitsu employees participated. The prevalence of migraine was 16.7%, tension-type headache 40.7%, and cluster headache 0.5%. After completing the training, 82.9% of participants without headache said they would change their attitude towards colleagues with headache disorders and 72.5% of total participants said their understanding of headache changed. The proportion of employees who thought that headache had a significant impact on people’s lives increased from 46.8% to 70.6%; 2971 (4.1%) of all participants were interested in a virtual consultation with a headache specialist as part of the program, more than half of whom had not previously consulted for headache. Approximately 14.7 days per year of full productivity per employee with headache were gained resulting in an annual productivity saving per employee of US$4531. Conclusion This unique headache workplace program was associated with a high level of participation, an improvement in the understanding of migraine and attitude towards colleagues with migraine, reduction in disability and increased employee productivity, and decreased costs of lost productivity due to migraine. Workplace programs for migraine should be considered for all industry sectors.

OBJECTIVE To evaluate whether the 15-day threshold of headache days per month adequately reflects substantial differences in disability across the full spectrum of migraine. BACKGROUND The monthly frequency of headache days defines migraine subtypes and has crucial implications for epidemiological and clinical research as well as access to care. METHODS The patients with migraine (N = 836) who participated in the American Registry for Migraine Research, which is a multicenter, longitudinal patient registry, between February 2016 and March 2020, were divided into four groups based on monthly headache frequency: Group 1 (0-7 headache days/month, n = 286), Group 2 (8-14 headache days/month, n = 180), Group 3 (15-23 headache days/month, n = 153), Group 4 (≥24 headache days/month, n = 217). Disability (MIDAS), Pain intensity (NRS), Work Productivity and Activity Impairment (WPAI), Pain Interference (PROMIS-PI), Patient Health Questionnaire-4 (PHQ-4), and General Anxiety Disorder-7 (GAD-7) scores were compared. RESULTS Mean (standard deviation [SD]) age was 46 (13) years (87.9% [735/836] female). The proportion of patients in each group was as follows: Group 1 (34.2% [286/836]), Group 2 (21.5% [180/836]), Group 3 (18.3% [153/836]), and Group 4 (26.0% [217/836]). There were significant relationships with increasing disability, lost productive time, and pain interference in higher headache frequency categories. There were no significant differences between Group 2 and Group 3 for most measures (NRS, all WPAI scores, PROMIS-PI, GAD-7, and PHQ-4), although MIDAS scores differed (median [interquartile range (IQR)]; 38 [20-58] vs. 55 [30-90], p

In 2017, the International Headache Society convened a Global Patient Advocacy Summit (GPAS-1) to begin a collaborative effort involving patients, patient advocates, patient advocacy organizations, healthcare professionals, scientists, professional pain, neurology, and headache societies, pharmaceutical manufacturers, and regulatory agencies to advance issues of importance to patients affected by headache worldwide. In September 2019, the second Global Patient Advocacy Summit (GPAS-2) was convened to revisit issues from the inaugural meeting, assess the progress of the International Headache Society Global Patient Advocacy Coalition (IHS-GPAC) in meeting the goals set forth therein, and discuss strategies for achieving established goals and supporting future development. Short- and long-term mandates from the first Summit were realized, including publishing the Vancouver Declaration on Global Headache Patient Advocacy 2018, determining the governing and operational structures of the IHS-GPAC, and helping to facilitate the first World Federation of Neurology World Brain Day dedicated to migraine. Another short-term mandate, creating a unified advocacy strategy, was fulfilled by the Coalition’s decision to focus on encouraging support from employers and implementing employee support programs for people with migraine. To help execute the strategy, the Coalition is developing an employer engagement toolkit that will educate employers and employees about the impact of migraine in the workplace, reduce stigma directed toward employees with migraine, and facilitate the care of employees with migraine to reduce the burden of illness and improve workplace productivity. Coalition members will disseminate the toolkit and encourage the adoption of migraine workplace programs by employers worldwide. The Coalition has established an alliance with two global, multinational employers to expand migraine awareness and support among policy makers and other stakeholders around the world. The IHS-GPAC met many of the goals established at GPAS-1, and it has initiated a global strategy focused on the psychosocial and economic toll of headache disorders, especially migraine, in the workplace. Ongoing and future activities will explore a range of opportunities with employers and across the full spectrum of advocacy goals.

ObjectivesAs part of the worldwide My Migraine Voice survey, this study evaluated the real-world healthcare resource utilization (HRU) and impact on work and activity impairment among people living with migraine in the United Kingdom (UK).MethodsAn analysis was conducted using UK subset data from My Migraine Voice survey: a worldwide, cross-sectional, online study including respondents (≥18 years), with ≥4 monthly migraine days, with 90% having used preventive migraine treatment in the preceding three months. HRU (Emergency room [ER] visits and hospitalisations) and impact of migraine on work and daily activities were evaluated and compared amongst different preventive treatment failure (TF) patient subgroups.ResultsOf the 690 respondents, 17% had visited ER (average 2.8 times/year), and 13% were hospitalised (average 3.0 days). Participants reported 13% missed working time (absenteeism), 52% reduction in productivity (presenteeism), and 58% reduction in both overall work productivity and daily activities due to migraine in last 7-days. HRU, absenteeism and presenteeism was higher in those with ≥2 TF vs patients with no TF.ConclusionThis study demonstrates the burden among patients with migraine in terms of HRU, work productivity loss, and activity impairment. The impact is increased in patients who have had ≥2 preventive treatment failures.

Background Headache disorders comprise the three most prevalent medical disorders globally and contribute almost 20% to the total burden of neurologic illness. Although the experience of a recurrent headache disorder tends to be highly individualized, patient preferences tend to be a low priority in guidelines for the management of patients with headache. Methods In September 2017, the first Global Patient Advocacy Summit was convened, bringing together patients, patient advocates, patient advocacy organizations, healthcare professionals, pharmaceutical manufacturers, scientists, and regulatory agencies to advance issues of importance to patients affected by headache worldwide. Results Presentations and discussion covered multiple issues, such as improving access to appropriate medical care; incorporating the insights of independent patient advocates and advocacy organizations; leveraging the insights, experience and influence of leading health and neurological organizations; and raising awareness of the role of regulatory agencies in disease advocacy. Attendees agreed that it is important to understand and promote the global, regional, and local interests of people with headache disorders, as well as challenge the pervasive stigma associated with headache. They also agreed that those with severe, recurrent, or disabling headache disorders should have reliable access to competent medical care; healthcare professionals should have access to adequate training in Headache Medicine; global benchmarks should be established for accurate diagnosis and the use of evidence-based treatments in patients with headache; and that information is needed about consultation, diagnosis, and treatment of headache, particularly in regard to patient preferences. Conclusion Based on the group’s consensus around these issues, a series of statements was developed, and they are collectively presented herein as the Vancouver Declaration on Global Headache Patient Advocacy 2018.

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. CA extern

The World Headache Alliance (WHA) works to reduce the burden of headache worldwide. Headache disorders are real, common and affect people of all ages, everywhere in the world. To reduce the burden resulting from untreated or mistreated headache disorders, WHA has developed initiatives to raise awareness. By increasing capacity of lay support groups to raise awareness and speak with their governments, WHA hopes to provide a conduit that will encourage sufferers to seek and have access to appropriate treatment. In its five-year history, WHA has provided a global stage for headache awareness through: establishment of World Headache Awareness Month (WHAM), global conventions with training and support for governmental relations, media training and scientific review, a state-of-the-art Web site with strong Internet presence and sound, informative content, presentation of the Elizabeth Garrett Anderson Award, and speakers, posters and special lectures at professional congresses. Review of successes and lessons learned will steer WHA's initiatives for future success.

Publisher Summary The chapter discusses the role of lay associations catering for people with migraine and other headache disorders. Most lay associations have come into existence in response to an unmet need. The role of the lay association is primarily to help the individual sufferer with information and support. Another function of lay associations is to provide information to policy-makers and the public at large, by raising awareness of the condition and by encouraging research. These roles are probably best illustrated by reference to the development and operation of services provided by the Migraine Association of Ireland (MAI) in recent times. From very basic beginnings the MAI has become a properly organized and staffed center for sharing information and providing support, and an active advocate for better services. A brief description of the MAI's major successes to date is discussed. There is huge potential in the field of headache/migraine for research and improvements in treatments and services to sufferers. The lay associations present an obvious and extremely cooperative resource for piloting research initiatives, trialing treatment, and medical innovations.

Access to care for headache sufferers is not always simple. A survey conducted in a large number of members of lay associations point to the existence of multiple barriers to care for headache in several European countries. Patients usually discover the existence of specialized structures with a delay of several years after the onset of their headache. Furthermore, a relevant portion of them are not satisfied with the management of their disease, partly because of the poor efficacy of treatments and partly because of the difficulty to get in touch with the specialist. Headache disorders, and primary headaches in particular, represent an important issue in public health, because they are common, disabling and treatable. A joint effort is required from the relevant stakeholders (scientists, lay organizations, decision-makers, healthcare policymakers, and others) to improve the access to care for headache sufferers.