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BACKGROUND There is an unmet need for a better understanding and management of headache, particularly migraine, beyond specialist centers, which may be facilitated using digital technology. OBJECTIVE The objective of this study was to identify where, when, and how people with headache and migraine describe their symptoms and the nonpharmaceutical and medicinal treatments used as indicated on social media. METHODS Social media sources, including Twitter, web-based forums, blogs, YouTube, and review sites, were searched using a predefined search string related to headache and migraine. The real-time data from social media posts were collected retrospectively for a 1-year period from January 1, 2018, to December 31, 2018 (Japan), or a 2-year period from January 1, 2017, to December 31, 2018 (Germany and France). The data were analyzed after collection, using content analysis and audience profiling. RESULTS A total of 3,509,828 social media posts related to headache and migraine were obtained from Japan in 1 year and 146,257 and 306,787 posts from Germany and France, respectively, in 2 years. Among social media sites, Twitter was the most used platform across these countries. Japanese sufferers used specific terminology, such as “tension headaches” or “cluster headaches” (36%), whereas French sufferers even mentioned specific migraine types, such as ocular (7%) and aura (2%). The most detailed posts on headache or migraine were from Germany. The French sufferers explicitly mentioned “headache or migraine attacks” in the “evening (41%) or morning (38%),” whereas Japanese mentioned “morning (48%) or night (27%)” and German sufferers mentioned “evening (22%) or night (41%).” The use of “generic terms” such as medicine, tablet, and pill were prevalent. The most discussed drugs were ibuprofen and naproxen combination (43%) in Japan; ibuprofen (29%) in Germany; and acetylsalicylic acid, paracetamol, and caffeine combination (75%) in France. The top 3 nonpharmaceutical treatments are hydration, caffeinated beverages, and relaxation methods. Of the sufferers, 44% were between 18 and 24 years of age. CONCLUSIONS In this digital era, social media listening studies present an opportunity to provide unguided, self-reported, sufferers’ perceptions in the real world. The generation of social media evidence requires appropriate methodology to translate data into scientific information and relevant medical insights. This social media listening study showed country-specific differences in headache and migraine symptoms experienced and in the times of the day and treatments used. Furthermore, this study highlighted the prevalence of social media usage by younger sufferers compared to that by older sufferers. CLINICALTRIAL

Objetivo: valorar el uso de terapias alternativas no farmacológicas en migraña y variables relacionadas. La migraña afecta a una de cada diez personas en elmundo, con aumento creciente y mayor prevalencia entre mujeres de zonas urbanas. Aunque los tratamientos habituales son farmacológicos, se ha incrementado el uso de terapias alternativas no farmacológicas en migraña y variables relacionadas. Materiales y métodos: estudio observacional transversal mediante encuesta anónima vía web a 3.342 pacientes de países europeos sobre el usode terapias alternativas para tratamiento de migraña. Variables de estudio: edad, género, país, tipo de localidad, nivel de estudios, ámbito rural o urbano y respuesta al tratamiento. Resultados: la utilización de terapias alternativas en migraña esun fenómeno creciente, con mayor uso en pacientes entre 41-60 años y estudios superiores. Conclusiones: en migraña se observan diferencias por edad, género, nivel cultural y país de procedencia. El uso de la medicina complementaria como alternativa terapéutica en la migraña es poco habitual y se debería indagar con mayor profundidad estableciendo relaciones que permitan apoyar al paciente afectado y priorizar las de mayor evidencia científica.

Background Health economic evaluations support health-care decision-making by providing information on the costs and consequences of health interventions. No universally accepted methodology exists for modelling effectiveness and cost-effectiveness of interventions designed to close treatment gaps for headache disorders in countries of Europe (or elsewhere). Our aim here, within the European Brain Council’s Value-of-Treatment project, was to develop headache-type-specific analytical models to be applied to implementation of structured headache services in Europe as the health-care solution to headache. Methods We developed three headache-type-specific decision-analytical models using the WHO-CHOICE framework and adapted these for three European Region country settings (Luxembourg, Russia and Spain), diverse in geographical location, population size, income level and health-care systems and for which we had population-based data. Each model compared current (suboptimal) care vs target care (delivered in accordance with the structured headache services model). Epidemiological and economic data were drawn from studies conducted by the Global Campaign against Headache; data on efficacy of treatments were taken from published randomized controlled trials; assumptions on uptake of treatments, and those made for Healthy Life Year (HLY) calculations and target-care benefits, were agreed with experts. We made annual and 5-year cost estimates from health-care provider (main analyses) and societal (secondary analyses) perspectives (2020 figures, euros). Results The analytical models were successfully developed and applied to each country setting. Headache-related costs (including use of health-care resources and lost productivity) and health outcomes (HLYs) were mapped across populations. The same calculations were repeated for each alternative (current vs target care). Analyses of the differences in costs and health outcomes between alternatives and the incremental cost-effectiveness ratios are presented elsewhere. Conclusions This study presents the first headache-type-specific analytical models to evaluate effectiveness and cost-effectiveness of implementing structured headache services in countries in the European Region. The models are robust, and can assist policy makers in allocating health budgets between interventions to maximize the health of populations.

BackgroundThere have been several calls for estimations of costs and consequences of headache interventions to inform European public-health policies. In a previous paper, in the absence of universally accepted methodology, we developed headache-type-specific analytical models to be applied to implementation of structured headache services in Europe as the health-care solution to headache. Here we apply this methodology and present the findings.MethodsData sources were published evidence and expert opinions, including those from an earlier economic evaluation framework using the WHO-CHOICE model. We used three headache-type-specific analytical models, for migraine, tension-type-headache (TTH) and medication-overuse-headache (MOH). We considered three European Region case studies, from Luxembourg, Russia and Spain to include a range of health-care systems, comparing current (suboptimal) care versus target care (structured services implemented, with provider-training and consumer-education). We made annual and 5-year cost estimates from health-care provider and societal perspectives (2020 figures, euros). We expressed effectiveness as healthy life years (HLYs) gained, and cost-effectiveness as incremental cost-effectiveness-ratios (ICERs; cost to be invested/HLY gained). We applied WHO thresholds for cost-effectiveness.ResultsThe models demonstrated increased effectiveness, and cost-effectiveness (migraine) or cost saving (TTH, MOH) from the provider perspective over one and 5 years and consistently across the health-care systems and settings. From the societal perspective, we found structured headache services would be economically successful, not only delivering increased effectiveness but also cost saving across headache types and over time. The predicted magnitude of cost saving correlated positively with country wage levels. Lost productivity had a major impact on these estimates, but sensitivity analyses showed the intervention remained cost-effective across all models when we assumed that remedying disability would recover only 20% of lost productivity.ConclusionsThis is the first study to propose a health-care solution for headache, in the form of structured headache services, and evaluate it economically in multiple settings. Despite numerous challenges, we demonstrated that economic evaluation of headache services, in terms of outcomes and costs, is feasible as well as necessary. Furthermore, it is strongly supportive of the proposed intervention, while its framework is general enough to be easily adapted and implemented across Europe.

In countries where headache services exist at all, their focus is usually on specialist (tertiary) care. This is clinically and economically inappropriate: most headache disorders can effectively and more efficiently (and at lower cost) be treated in educationally supported primary care. At the same time, compartmentalizing divisions between primary, secondary and tertiary care in many health-care systems create multiple inefficiencies, confronting patients attempting to navigate these levels (the “patient journey”) with perplexing obstacles.High demand for headache care, estimated here in a needs-assessment exercise, is the biggest of the challenges to reform. It is also the principal reason why reform is necessary.The structured headache services model presented here by experts from all world regions on behalf of the Global Campaign against Headache is the suggested health-care solution to headache. It develops and refines previous proposals, responding to the challenge of high demand by basing headache services in primary care, with two supporting arguments. First, only primary care can deliver headache services equitably to the large numbers of people needing it. Second, with educational supports, they can do so effectively to most of these people. The model calls for vertical integration between care levels (primary, secondary and tertiary), and protection of the more advanced levels for the minority of patients who need them. At the same time, it is amenable to horizontal integration with other care services. It is adaptable according to the broader national or regional health services in which headache services should be embedded.It is, according to evidence and argument presented, an efficient and cost-effective model, but these are claims to be tested in formal economic analyses.

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.

Workplace health promotion integrates initiatives in health and safety in the occupational field, with personal improvements, increased productivity and lower risks and social cost, especially with respect to migraine headaches, a neurological disorder affecting approximately 11% of the population. The objective of this study was to know the preventive resources available to workers with migraine headaches and the preventive management options in their companies.Cross-sectional observational study of 3,342 patients from Spain, Italy, France, Portugal, Ireland, United Kingdom, Germany and other European Union countries, conducted through an anonymous survey on the web of the European MigraineHeadache Alliance (EMHA-web), from September 2018 to January 2019.Occupational stress (77.65%) and use of computer monitors (63.87%) are the most common risks described by workers with migraine. About. 43.71% of workers are not familiar with the type of occupational health service present in their company, 49.06% do not have a medical service; 67.67% reported no work-related limitations due to migraine, neither dismissal nor non-renewal of their contract (88.29%), but 42.14% had experienced some conflict due to decreased productivity; 26.54% were unaware of the concept of vulnerable workers or had not requested this status because of their migraine (63.8%), nor had.INTRODUCCIÓN: La promoción de la salud en el trabajo integra las iniciativas en salud y seguridad en ámbito ocupacional, con mejoras personales, incremento de productividad y menores riesgos y gastos sociales, especialmente en migraña, como enfermedad neurológica con prevalencia estimada en el 11% de la población. El objetivo de este trabajo fue conocer las condiciones preventivas de los trabajadores con migraña y las opciones de gestión preventiva en sus empresas. MÉTODO: Estudio observacional transversal realizado en 3.342 pacientes de España, Italia, Francia, Portugal, Irlanda, Reino Unido, Alemania y otros países de la UE mediante encuesta anónima en la web de la European MigraineHeadache Alliance(EMHA-web), entre septiembre de 2018 y enero de 2019.RESULTADOS: Estrés laboral (77.65%) y uso de PVD (63.87%) son los riesgos más referidos por los trabajadores con migraña. El 43.71% de trabajadores desconoce el tipo de Servicio de Prevención de su empresa, 49.06% no dispone de servicio médico; el 67.67% no ha tenido impedimentos de acceso laboral por migraña, ni despido o no renovación del contrato (88,29%), pero el 42,14% tuvo algún conflicto por pérdida de productividad; el 26,54% desconoce el concepto de especial sensibilidad o no lo ha solicitado por migraña (63,8%), ni ha demandado modificaciones laborales (67,64%) o cambio de puesto de trabajo (80,89%); un 55,42% no se ha sentido comprendido ni apoyado por su empresa en sus limitaciones por migraña, pero sí por los compañeros (63,07%). CONCLUSIÓN:Se observa una deficiente información preventiva y escaso uso de las opciones de gestión adaptativa en las empresas para personas con migraña.

AIMS To assess the reimbursement options and accessibility of three effective medicines for cluster headache (CH) (subcutaneous sumatriptan, oxygen, and zolmitriptan spray) across the European Union (EU). METHODS A brief survey investigating the availability of symptomatic treatments for CH was sent by email in January 2017 to at least one headache specialist for every single country in the EU. RESULTS The questionnaire was completed by 26 headache specialists (93% of the EU countries, representing 99.75% of the European population) and by 10 CH patients representative of patient organizations. Oxygen was reimbursable for 63% of the CH population. Oxygen device was reimbursable for 50% of the CH EU population. Subcutaneous sumatriptan was reimbursable for 66% and was accessible without restrictions for 45% of the CH EU population. Zolmitriptan spray was reimbursable for 23.7% and accessible without restrictions for 30.9% of the CH EU population. CONCLUSION Only 47% of the EU population had unrestricted access to effective CH treatments, with unacceptable inequalities between eastern countries and the rest of Europe. Headache societies and patient associations should pressure European and national health authorities to improve the availability of effective symptomatic treatments for CH.

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

Results Eighty-three advices from 25 EPs (SP, I, UK, NL, SWE) were available for a qualitative content analysis. Seventyseven percent of the EPs’ advices could be grouped in 7 main recommendations: 1) CH diagnosis is easy if you consider few clinical clues; 2) prescribe sumatriptan and oxygen; 3) suggest patient to avoid hiding and to be active in a patients’ support group; 4) take patient seriously and listen to him/her; 5) provide good information and be able to correct the misleading ones; 6) be sensitive to CH impact on the patient’s significant one; 7) acknowledge that CH is a serious medical disorder that can have a significant impact on the person and support him/her. Conclusions EPs’ recommendations should be used to propose pragmatic patient-centered changes in healthcare services dedicated to CH. Written informed consent to publication was obtained from the patient(s).

Background: Headache disorders and psychiatric disorders are both common, while evidence, mostly pertaining to migraine, suggests they are comorbid more often than might be expected by chance. There are good reasons for establishing whether they are: symptoms of comorbid illnesses may summate synergistically; comorbidities hinder management, negatively influencing outcomes; high-level comorbidity indicates that, where one disease occurs, the other should be looked for. The Eurolight project gathered population-based data on these disorders from 6624 participants. Methods: Eurolight was a cross-sectional survey sampling from the adult populations (18–65 years) of 10 EU countries. We used data from six. The questionnaire included headache-diagnostic questions based on ICHD-II, the Headache-Attributed Lost Time (HALT) questionnaire, and HADS for depression and anxiety. We estimated odds ratios (ORs) to show associations between migraine, tension-type headache (TTH) or probable medication-overuse headache (pMOH) and depression or anxiety. Results: pMOH was most strongly associated with both psychiatric disorders: for depression, ORs (vs no headache) were 5.5 [2.2–13.5] (p

Background Most primary headaches are episodic, and most estimates of the heavy disability burden attributed to headache derive from epidemiological data focused on the episodic subtypes of migraine and tension-type headache (TTH). These disorders give rise directly but intermittently to symptom burden. Nevertheless, people with these disorders may not be symptom-free between attacks. We analysed the Eurolight dataset for interictal burden. Methods Eurolight was a cross-sectional survey using modified cluster sampling from the adult population (18–65 years) in 10 countries of the European Union. We used data from nine. The questionnaire included headache-diagnostic questions based on ICHD-II and several question sets addressing impact, including interictal and cumulative burdens. Results There were 6455 participants with headache (male 2444 [37.9 %]). Interictal symptoms were reported by 26.0 % of those with migraine and 18.9 % with TTH: interictal anxiety by 10.6 % with migraine and avoidance (lifestyle compromise) by 14.8 %, both much more common than in TTH (3.1 % [OR 3.8] and 4.7 % [OR 3.5] respectively). Mean time spent in the interictal state was 317 days/year for migraine, 331 days/year for TTH. Those who were “rarely” or “never” in control of their headaches (migraine 15.2 %, TTH 9.6 %) had significantly raised odds of interictal anxiety, avoidance and other interictal symptoms. Among those with migraine, interictal anxiety increased markedly with headache intensity and frequency, avoidance less so but still significantly. Lost productive time was associated with high ORs (up to 5.3) of anxiety and avoidance. A third (32.9 %) with migraine and a quarter (26.7 %) with TTH (difference: p

Background Surveys enquiring about burden of headache over a prior period of time (eg, 3 months) are subject to recall bias. To eliminate this as far as possible, we focused on presence and impact of headache on the preceding day (“headache yesterday”). Methods Adults (18-65 years) were surveyed from the general populations of Germany, Italy, Lithuania, Luxembourg and the Netherlands, from a work-force population in Spain and from mostly non-headache patient populations of Austria, France and UK. A study of non-responders in some countries allowed detection of potential participation bias where initial participation rates were low. Results Participation rates varied between 11% and 59% (mean 27%). Non-responder studies suggested that, because of participation bias, headache prevalence might be overestimated in initial responders by up to 2% (absolute). Across all countries, 1,422 of 8,271 participants (15-17%, depending on correction for participation bias) had headache yesterday lasting on average for 6 hours. It was bad or very bad in 56% of cases and caused absence from work or school in 6%. Among those who worked despite headache, 20% reported productivity reduced by >50%. Social activities were lost by 24%. Women (21%) were more likely than men (12%) to have headache yesterday, but impact was similar in the two genders. Conclusions With recall biases avoided, our findings indicate that headache costs at least 0.7% of working capacity in Europe. This calculation takes into account that most of those who missed work could make up for this later, which, however, means that leisure and social activities are even more influenced by headache.

Background European data, at least from Western Europe, are relatively good on migraine prevalence but less sound for tension-type headache (TTH) and medication-overuse headache (MOH). Evidence on impact of headache disorders is very limited. Eurolight was a data-gathering exercise primarily to inform health policy in the European Union (EU). This manuscript reports personal impact. Methods The study was cross-sectional with modified cluster sampling. Surveys were conducted by structured questionnaire, including diagnostic questions based on ICHD-II and various measures of impact, and are reported from Austria, France, Germany, Italy, Lithuania, Luxembourg, Netherlands, Spain and United Kingdom. Different methods of sampling were used in each. The full methodology is described elsewhere. Results Questionnaires were analysed from 8,271 participants (58% female, mean age 43.4 y). Participation-rates, where calculable, varied from 10.6% to 58.8%. Moderate interest-bias was detected. Unadjusted lifetime prevalence of any headache was 91.3%. Gender-adjusted 1-year prevalences were: any headache 78.6%; migraine 35.3%; TTH 38.2%, headache on ≥15 d/mo 7.2%; probable MOH 3.1%. Personal impact was high, and included ictal symptom burden, interictal burden, cumulative burden and impact on others (partners and children). There was a general gradient of probable MOH > migraine > TTH, and most measures indicated higher impact among females. Lost useful time was substantial: 17.7% of males and 28.0% of females with migraine lost >10% of days; 44.7% of males and 53.7% of females with probable MOH lost >20%. Conclusions The common headache disorders have very high personal impact in the EU, with important implications for health policy. Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (https://creativecommons.org/licenses/by/4.0), which permits use, duplication, adaptation, distribution, and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.

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.