The overall aim of Lifting The Burden is to have headache disorders recognised around the globe as real, disabling and deserving of medical care, with treatment available to all who need it.

Stage 1

For this to be achieved, the first priority for the campaign is to understand the global burden of headache. Over the past couple of years work has identified what data are available and where they are lacking. Within the past 18 months, Lifting The Burden has published a comprehensive review of the data and found¹:

• most of the prevalence data are from Western Europe and North America, with much of the evidence relating specifically to migraine

• globally, 46% of adults have an active headache disorder, with 1-year prevalences of 42% for tension-type headache, 11% for migraine and 3% for chronic daily headache

• the disability burden of tension-type headache is even more than is seen with migraine - as a result, headache disorders collectively are among the top ten most disabling conditions to live with.

Just as crucially, the review also highlighted those areas where there are few or no prevalence data - including the world's most populous regions, such as China, India, Russia and the former states of the USSR, and most of Africa.

This has stimulated Lifting The Burden projects in Moldova, Georgia and Russia.

Molodova²
The only headache epidemiology study ever performed in Moldova found 54% of those surveyed reported a headache of some sort within the past year. Migraine was diagnosed in 17.5% of subjects: 15.8% without aura and 2.3% with aura. Tension-type headache (TTH) was identified in 17.9% of subjects: infrequent episodic TTH in 1%, frequent episodic TTH in 13.8% and chronic TTH in 3.1%. A total of 4.7% of respondents reported CDH - that is, headache on more days than not.

The prevalences of migraine and CDH are on a par with those in other parts of Europe, but TTH prevalence is markedly less common. The authors suggest that headache is not considered a medical problem within the general population of Moldova, and those with less troublesome headache may have felt it not worthy of mention.

Georgia³
In Georgia, a path-finding study found 48% of the population had experienced a headache within the past year with migraine affecting 13%, tension-type headache 33% and chronic daily headache 8%. These results are broadly in line with global prevalence estimates for migraine and tension-type headache; however, chronic daily headache was more prevalent than elsewhere. Less than half of subjects used acute medication, primarily combination analgesics. Triptans were not used at all. Around 3% of subjects overused acute headache medication. No respondent received preventative drugs and none had seen a neurologist for their headache disorder.

A full study has been completed, with results to be published in 2009.

Russia
After a pilot in Smolensk, a validation study of 500 people has been completed. A further 1500 people will participate in the full study during 2009.

China, Brazil and Africa

• A large-scale population based study of 5,000 people in mainland China has just got underway. Despite being one of the world's most populous countries, there are no formal epidemiological data available for China, so Lifting The Burden's study is groundbreaking and will provide a valuable insight into the burden faced by headache sufferers in this part of the world.

• Investigator support has been secured in Brazil to conduct a burden of headache study in 2009, subject to funding.

• Population-based studies in Africa are being considered first in southern Africa. Initial plans are for a study in Zambia of both urban and rural populations.

Stage 2

The second phase of Lifting The Burden is to use the knowledge acquired from the garnering of prevalence data to raise awareness of the burden of headache, not just among those who suffer but, more importantly, to target healthcare providers and policy makers to ensure headache disorders are recognised as exerting a significant economic and humanitarian impact.

Stage 3

The third phase is to work with local agencies in the pursuit and achievement of beneficial change so those with headache get access to the services and treatment they need to alleviate their personal burdens of headache.

Already work is underway in this area to develop tools that can help healthcare professionals provide support for headache sufferers. Lifting The Burden has produced:

• Diagnostic criteria for headache in primary care. These are a cut down version of the International Classification for Headache Disorders. Region-specific variations will be developed for use around the world.

• The Headache-Attributed Lost Time (HALT) index to allow healthcare professionals to assess the headache burden in a sufferer before devising a management plan.

• The Headache Under-Response to Treatment (HURT) index - a vital management aid for the primary healthcare provider in determining when treatment is sub-optimal and how it can be improved.

For headache sufferers, the campaign has produced a range of information leaflets on migraine, tension-type headache, cluster headache, chronic headache and headache and female hormones.

In addition, Lifting The Burden is working with the European Headache Federation on a proposal for the minimum standards needed for headache services across Europe.

¹ Stovner LJ, Hagen K, Jensen R, Katsarava Z, Lipton R, Scher AI et al. The global burden of headache: a documentation of headache prevalence and disability worldwide. Cephalalgia 2007;27:193-210.

² Moldovanu I, Ciobanu L, Corcea G, et al. The prevalence of headache disorders in the Republic of Moldova: a population-based study. Presented at the 13th Congress of the International Headache Society, Stockholm, Sweden, June 2007. Abstract D101.

³ Z Katsarava, M Kukava, E Mirvelashvili, A Tavadze, A Dzagnidze, M Djibuti and TJ Steiner. Prevalence of idiopathic headache in the Republic of Georgia. Presented at the International Headache Research Seminar, Chicago, US, March 2008.