The First Seven Years
Filling the very large gaps in knowledge for action has been the first priority.
No standard methodology existed for population-based burden-of-headache studies, so Lifting The Burden developed its own. The model calls for a representative mix of urban and rural population samples, encountered by door-to-door "cold-calling" at randomly-selected households; from each household, one adult, also randomly selected, is interviewed. The structured diagnostic questionnaire, based on ICHD-II, is validated in a pilot study within the population to be surveyed.
Applying this model, studies have been completed in Georgia [reference 1] [reference 2] [reference 3] and Moldova [reference 4] and have reached the analysis stage in Russia [reference 5], China [reference 6] and India. Others are underway in Zambia and Pakistan, and more are planned in Saudi Arabia, Ethiopia and, possibly, Morocco, Abu Dhabi, Guatemala, Belize, Serbia and Brazil.
So far, these have revealed an extraordinarily high prevalence of daily headache in countries of Eastern Europe, highly prevalent migraine in Russia and, especially, in India (as represented by Karnataka State), and a prevalence of migraine in China, where it had been thought to be low, that is not very dissimilar from the global average of 11% [reference 7].
Lifting The Burden has been a partner in Eurolight, a project supported by the European Commission Public Health Executive Agency to survey the impact of headache throughout Europe. This has harvested information from people with headache in Austria, France, Germany, Ireland, Italy, Lithuania, Luxembourg, the Netherlands, Spain and the United Kingdom [reference 8]. All of this will soon be published.
As for awareness, at the International Headache Congress in Kyoto in October 2005, Lifting The Burden presented the Kyoto Declaration on Headache. This was drafted with the guidance and signed in the presence not only of WHO's Regional Director for the Western Pacific Region but also of representatives of the Japanese Ministry of Health, Labour and Welfare. Lifting The Burden secured the inclusion of headache disorders in the Atlas of Neurological Disorders [reference 9], produced in 2005 jointly by WHO and the World Federation of Neurology (WFN), and as a major chapter in WHO's later publication, Neurological disorders: public health challenges [reference 10].
All of these, not only because they have the imprimatur of WHO but also because their content is compelling, enter the consciousness of politicians, bringing awareness to them of headache as a substantial cause of public ill-health [reference 11]. So, too, does Lifting The Burden's joint review with WHO showing the paucity of headache research in low- and middle-income countries [reference 12], and even more so will the joint global survey for WHO's Atlas of Headache Disorders, published in May 2011 [reference 13]. The Atlas of Headache Disorders, one in the continuing series of Atlases published by WHO, includes data on headache and headache services gathered from more than 100 countries.
Politically more telling than all of these will be the inclusion of migraine and, for the first time, tension-type headache and medication-overuse headache in the new Global Burden of Disease Study 2010 (GBD2010). GBD2010 is a major revision of GBD2000, the importance of which, for the cause of headache, is that it attributed 1.4% of the global disability burden of disease to migraine, putting it in the top 20 causes of disability worldwide [reference 14]. It is essential for the future that GBD2010 accords due weight to the worldwide burden of headache, and Lifting The Burden has put much into assimilating, analysing and presenting the evidence on which this depends.
As Lifting The Burden considers models of headache service delivery and organization, and endeavours to make evidence-driven recommendations for change [reference 15] [reference 16], one clear principle is that most headache management belongs in primary care. The numbers of people who need it make this so [reference 16], but it is anyway the case that most headache management does not benefit from involvement of specialists. Non-specialists in primary care can do it perfectly well, although they do need some training.
Education is a central pillar of beneficial change [reference 17] [reference 18]. Training doctors to be better at managing headache is a huge undertaking on its own, but completely necessary: the current deficiencies in training, themselves engendered by the low priority given to headache, are at the heart (though not the whole cause) of the universal health-care failures for headache.
Education is required at all levels, and therefore an undertaking to be shared - with IHS, EHF and similar organisations, of course, but also with the universities. Within the Global Campaign is the Master's Degree in Headache Medicine at Sapienza University of Rome. This annual theoretical and practical course (next year's will be the eighth) is delivered by an international faculty [reference 19]. It is a training-the-trainers programme, directed at specialists but with the hope of reaching primary care, the intended target, as the trainees return as trainers to their home countries.
Management by non-specialists in primary care can be made better also by the provision of practical clinical management supports, upon which Lifting The Burden embarked by assembling a writing and review group from all world regions in order to ensure multicultural relevance - a cardinal requirement of everything the Global Campaign is engaged in.
Already produced, or in development, are diagnostic aids applying the criteria of ICHD-II, but simplified; regional management guidelines developed, where these exist, by harmonizing national guidelines [reference 20]; information sheets for patients to aid understanding and promote compliance with treatment [reference 21]; and universally acceptable indices of impact and treatment outcome [reference 22]. The last was developed at a technical consensus meeting on headache outcome measures at WHO headquarters in April 2006, and follow-up validation and evaluation studies are being conducted in six countries.
The Handbook of Headache, written by authors from all over the world and to be published in 2011 in print and electronically, is also aimed at non-specialists. It will complement these aids, providing detail when this is required.
Because good translation is crucial to multicultural relevance, Lifting The Burden has developed translation standards and protocols for Global Campaign materials [reference 23].
Lifting The Burden is working with, and supporting, the Cochrane Collaboration, fostering systematic reviews of treatments for headache. One of the purposes is to be able to advise WHO on revisions to their essential medicines list which, in time, will encourage availability worldwide of the drugs most needed to treat headache effectively.
As for actual intervention, Lifting The Burden has developed a headache-service model, to be tested soon in Georgia and later, if plans go forward, in Bulgaria and Abu Dhabi. The model is adaptable, but involves first assessing local need, together with willingness to pay, upon which sustainability will depend. The next steps in Georgia are to establish two clinics, provide free care and drugs to geographically-defined populations and show the benefits of treatment to people and of the service to population health. Once these benefits are apparent, and only then, the service will charge according to willingness to pay in order to become self-sustaining.
Ultimately, Lifting The Burden must evaluate what it helps to create, and amend it, in an iterative process if necessary, to achieve what is best possible. This raises a fundamental question: what is a good headache service?
Surprisingly, or perhaps not, "quality" in the context of headache services has no accepted definition. Indeed it is not easily defined, although in part it must lie in the attainment of good outcomes, which can be measured. In preparing its proposals for headache-service quality evaluation, soon to be published, Lifting The Burden has undertaken a worldwide consultation.
This is a summary of what has happened in the first seven years of the Campaign. Not everything has been included. The activities represent many more than a single step [reference 24]; more importantly, the steps are all in one and the right direction - each part of a cohesive, managed project directed towards a clear purpose.
They involve actions in 28 countries, a seventh of the world's total.
- Kukava M et al. Validation of a Georgian language headache questionnaire in a population-based sample. J Headache Pain 2007; 8: 321-324. [view document]
- Katsarava Z et al. Prevalence of cluster headache in the Republic of Georgia: results of a population-based study and methodological considerations. Cephalalgia 2009; 29: 949-952.
- Katsarava Z et al. Primary headache disorders in the Republic of Georgia: prevalence and risk factors. Neurology 2009; 73: 1796-1803.
- Moldovanu I et al. The prevalence of headache disorders in the Republic of Moldova: a population-based study. Cephalalgia 2007; 27: 673.
- Ayzenberg I et al. The burden of headache in Russia: validation of the diagnostic questionnaire in a population-based sample. Eur J Neurol 2011; 18: 454-459.
- Yu S-Y et al. The burden of headache in China: validation of diagnostic questionnaire for a population-based survey. J Headache Pain 2011; 12: 141-146. [view document]
- Stovner LJ et al. The global burden of headache: a documentation of headache prevalence and disability worldwide. Cephalalgia 2007; 27: 193-210. [view document]
- Andrée C et al. Development and validation of the EUROLIGHT questionnaire to evaluate the burden of primary headache disorders in Europe. Cephalalgia 2010; 30: 1082-1100.
- World Health Organization, World Federation of Neurology. Atlas: Country resources for neurological disorders 2004. Geneva: WHO 2004.
- World Health Organization. Neurological disorders: public health challenges. Geneva: WHO 2007.
- Martelletti P et al. The definitive position of headache among the major public health challenges. An end to the slippery slope of disregard [editorial]. J Headache Pain 2007; 8: 149-151. [view document]
- Mateen F et al. Headache disorders in developing countries: research over the past decade. Cephalalgia 2008; 28: 1107-1114.
- World Health Organization. Atlas of headache disorders and resources in the world 2011. Geneva: WHO 2011.
- World Health Organization. World Health Report 2001. Geneva: WHO 2001.
- Antonaci F et al. Proposals for the organisation of headache services in Europe. Intern Emerg Med 2008; 3: S25-S28.
- Steiner TJ et al on behalf of the European Headache Federation and Lifting The Burden: the Global Campaign against Headache. Recommendations for headache service organisation and delivery in Europe. J Headache Pain (DOI: 10.1007/s10194- 376011-0320-x) (in press). [view document]
- Steiner TJ. Lifting the burden: the global campaign against headache. Lancet Neurol 2004; 3: 204-205. [view document]
- Steiner TJ. Lifting The Burden: The global campaign to reduce the burden of headache worldwide. J Headache Pain 2005; 6: 373-377. [view document]
- Martelletti P et al. The Global Campaign to Reduce the Burden of Headache Worldwide. The International Team for Specialist Education (ITSE). J Headache Pain 2005; 6: 261-263. [view document]
- Steiner TJ et al. European principles of management of common headache disorders in primary care. J Headache Pain 2007; 8 suppl 1: S3-S21. [view document]
- Steiner TJ. Information for patients. J Headache Pain 2007; 8 suppl 1: S26-S39. [view document]
- Steiner TJ. The HALT and HART indices. J Headache Pain 2007; 8 suppl 1: S22-S25. [view document]
- Peters M. Translation protocols. J Headache Pain 2007; 8 suppl 1: S40-S47. [view document]
- "A journey of a thousand miles begins with a single step" (attributed to Confucius).
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