Headache disorders vary in severity, incidence and duration with a lack of public/professional awareness of their epidemiology (burden/risk) and impact on sufferers, carers, family, colleagues and society. Information is needed to achieve greater recognition and transparency. Headache, particularly chronic and recurrent headaches are a major liability in the quality of life in Europe. Over 12% of the general population (2/3 females) have regular migraine attacks. Extrapolation of migraine attack prevalence and attach incidence suggest that 3000 migraine attacks occur every day for each million of the headache (TH) and other forms of nearly every day headaches, estimated as high as 1 in 25 of adults, are associated with long-term morbidity. People with migraine score highly on scales of general physical and mental-ill health. According to the WHO disability assessment, the disability of a day with severe migraine is in the highest disability category, the same disability category than quadriplegia. Social and work capacities are reduced in almost all migraine sufferers and in 60% of the TH sufferers. Migraine cost alone are estimated in EU-25, Norway, Iceland and Switzerland at 27 euro billion (2004 "Cost of disorders of the Brain", European Brain Council (EBC)). The public and majority of healthcare professionals perceive headache as a minor complaint, an excuse for absenteeism and that simple analgesics suffice. Headache predominates in women and sufferers have a normal life expectancy: this may explain that headache patients perceive less attention in resources than deserved and that physical, emotional, social and economic burdens of headache are poorly acknowledged compared to less prevalent neurological disorders. Patient advocacy is playing an increasingly important role in the setting of policy in the EU and improvements in patient care are likely to be hastened by public demand.
Limited data is available so far on headache disorders. The ECHI project, funded by the Public Health Programme, has compiled generic data on migraine or frequent headaches only including 12 month prevalence, by gender, age, region, SES (Socio Economic Status) and the WHO Atlas on Country resources has focused on the compilation of data on the frequency of primary and secondary care of headache in Europe. To date only pharmaceutical companies have drawn-up some evaluation on parts of the global burden of headache. There is no data at European level on prevalence and global impact of headache. The proposed project would be the first independent data collection on headache at European level focusing on a holistic, patient-driven and scientifically validated approach.
Funding was therefore needed because health sector policy makers are constrained in their ability to take decisions on effective measures for the benefit of patients suffering from headache disorders due to incomplete information on the prevalence, burden and impact of these disorders. An improvement in headache management and quality of life is expected.
The project needed EC funding because it is an essential pilot phase for the further application of the developed modules with surveys reaching all EU countries and compilation of an EU Register.