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Lifting The Burden
The Global Campaign to
Reduce the Burden of Headache Worldwide
Introduction to the Global Campaign
TJ Steiner (UK), for the Global Campaign Committee
The problem
Headache disorders are real and often lifelong illnesses. They are highly prevalent,
affecting men, women and children everywhere, and they are disabling. In the World
Health Report 2001, the World Health Organization ranked migraine among the top 20
causes in the world of years of healthy life lost to disability. Migraine alone is the
cause of an estimated 400,000 lost days from work or school every year per million of
the population in developed countries. Migraine harms family and social relationships
and damages quality of life. Migraine, however, is only one of the headache disorders
with public-health importance: others, including tension-type headache and the
various chronic daily headaches, together are believed to be responsible for at least
as much disability as migraine. If this is correct, headache disorders collectively are in
the top ten – and possibly the top five – causes of disability worldwide.
Appropriate health care alleviates this burden, but still it persists everywhere. This is
principally because health systems that should provide this care do not reach many
who need it.
A new solution
Lifting The Burden is a response to
this health-care failure, which has its
roots in education failure. Launched
in 2004, Lifting The Burden is a
formal collaboration between the
World
Headache
Alliance,
the
International Headache Society, the
European Headache Federation and
the World Health Organization.
Lifting The Burden
envisions a future world in
which headache disorders
are recognized everywhere
as
real,
disabling
and
deserving of medical care.
In this world, all who need
headache care have access
to
it,
without
artificial
barriers.
The first objective of Lifting The Burden is to know the size of the headache problem in all regions of the world.
This can be achieved by bringing out all of the available worldwide evidence of the burden attributable to
headache and by setting up new studies where the evidence is lacking or of poor quality.
The second objective is to exploit this evidence, as a means of persuading governments and other healthservice policy-makers, health-care providers, people directly affected by headache and the general population
that headache manifestly should have higher priority for treatment.
Lifting The Burden is founded on the belief that
the basis of the health-care solution for
headache in most parts of the world is
education. Hence, the third objective is to work
with local policy-makers and other key
stakeholders to plan and implement health-care
services for headache that are appropriate to
local systems, resources and locally-assessed
needs. Within these services, better diagnosis
and better care, and better understanding
amongst patients and the public, will all be
fostered through education.
Lifting The Burden believes that most headache management belongs in primary care,
where education must be supplemented by clinical management supports if diagnosis and
management are to be optimized. These include diagnostic aids and algorithms; regionbased management guidelines developed by harmonizing existing guidelines; information
sheets for patients, to aid understanding and promote compliance with treatment; and
universally acceptable indices of treatment outcome.
Lifting The Burden gratefully acknowledges unrestricted financial and/or logistic support from the following (in alphabetical order):
Allergan; Almirall; Astra Zeneca; Bayer Healthcare; Glaxo SmithKline; Janssen-Cilag; Merck, Sharp and Dohme; Pfizer
Lifting The Burden
The Global Campaign to
Reduce the Burden of Headache Worldwide
A partnership in action between the World Health Organization, World Headache Alliance,
International Headache Society and European Headache Federation
The global burden of headache
LJ Stovner (Norway), K Hagen (Norway), R Jensen (Denmark), Z Katsarava (Germany),
R Lipton (USA), AI Scher (USA), TJ Steiner (UK), J-A Zwart (Norway)
BACKGROUND: In WHO’s World Health Report 2001, migraine was ranked 19th among causes of years of life
lost to disability overall, and 12th in women. Other headache disorders were not included. The present study1
collates and presents all existing evidence of the world prevalence and burden of headache disorders.
METHODS: A comprehensive Medline search for
population-based studies of headache and migraine used
the search terms headache epidemiology or migraine
epidemiology or headache prevalence or migraine
prevalence. References listed in relevant publications
were also examined. All identified articles were screened
for various aspects of methodology and design, and type
of content, in order to select methodologically adequate
studies of interest for our purpose. Population-based
studies applying 1988 or 2004 International Headache
Society criteria for migraine and tension-type headache
(TTH), and also studies on headache in general and on
“chronic daily headache” (CDH), were included.
RESULTS: Of 107 studies deemed methodologically adequate
and relevant, most were from Western Europe and North
America and most concerned migraine (see map). Relatively
few studies concerned TTH (figure 1) and no studies, or
studies of only limited value for the present purpose, existed
for large and populous areas such as mainland China, India,
countries of the former USSR and large parts of Africa.
Globally, 46% of
adults had an
active headache
disorder, with 1year prevalences
of 42% for TTH,
11% for migraine
and 3% for CDH
(figure 1). There were marked differences between continents,
and all headache types seemed least prevalent in Africa.
Applying various formulae to calculate the burden of illness from
prevalence, headache frequency (mean headache days per person
in the population), intensity and/or duration (where such data
existed), we found that the worldwide disability attributable to
TTH was larger than that due to migraine (figure 2).
Figure 2. Headache burden
30,0
Headache frequency*intensity
Figure 1. Prevalence of adults with an
active headache disorder (ie, during
last year or less)
25,0
Global
20,0
Asia
15,0
Europe
N.America
10,0
S./C. America
5,0
0,0
Migraine
TTH
Total
CONCLUSIONS:
1. Although studies are lacking for important regions of the world, it is clearly documented that
headache is a major health problem on all continents.
2. There are differences in headache prevalence between the continents, but at present it is
impossible to know if these are real or due to methodological differences between studies.
3. TTH appears to impose greater burden on the population than migraine, and the disability due
to all headache is therefore almost certainly at least twice that of migraine.
4. If correct, these calculations bring headache disorders collectively into the 10 most disabling
conditions worldwide, and into the 5 most disabling for women.
1
Stovner LJ et al. The global burden of headache: a documentation of headache prevalence and disability worldwide. Cephalalgia. 2007;27:193-210
Lifting The Burden
The Global Campaign to
Reduce the Burden of Headache Worldwide
A partnership in action between the World Health Organization,
World Headache Alliance, International Headache Society and European Headache Federation
Prevalence of primary headache
disorders in the Republic of Georgia
Z Katsarava (Germany/Georgia), M Kukava (Georgia), A Dzagnidze (Georgia),
E Mirvelashvili (Georgia), M Djibuti (Georgia), R Jensen (Denmark),
LJ Stovner (Norway) and TJ Steiner (UK)
A Collaboration between Lifting The Burden and the
Russian Linguistic Subcommittee of the International Headache Society
AIM: To estimate the prevalences of migraine, tension-type Headache (TTH) and chronic daily headache (CDH)
in the Republic of Georgia.
BACKGROUND: The Republic of Georgia is located in the Caucasus. Its total population in 2000 was 4.4
million, 53% urban and 47% rural, with 1.5 million inhabitants in the Capital city, Tbilisi. No data currently exist
on the prevalence and impact of headache disorders in the countries of the former Soviet Union.
PROJECT DESIGN
Pilot Phase:
During a small pilot we established and tested the methodology.
Medical residents with a structured questionnaire visited adjacent
households in Tbilisi to interview a pre-defined target of 100
biologically unrelated subjects. All respondents reporting
headache in the previous year, as well as random 20 nonheadache controls, were examined by a neurologist. The
response rate was 70%. The questionnaire had sensitivities of
89% for migraine and 67% for TTH (overall kappa = 0.74).
Tbilisi
Kakheti
Population based validation of the questionnaire:
In second step we validated a Georgian language selfadministered questionnaire in a population-derived
sample of 186 subjects with headache, recruited
randomly during the first stage of the pilot. All subjects
completed the questionnaire and then were examined
by one of two headache-experienced neurologists who
were blind to the questionnaires.
Sensitivities and specificities were, respectively, 0.75
and 0.96 for migraine, 0.79 and 0.86 for TTH, and 0.61
and 0.84 for migraine+TTH (kappa = 0.68).
Main study
Using similar door-to-door methodology, we surveyed
two populations: one urban, in Tbilisi (n=1,136), and
one rural, in the eastern region of Kakheti (n=565).
These yielded 1,298 biologically unrelated adults (>16
years) of whom 722 (56%) were women. Mean age
was 45±13 years.
PRINCIPAL FINDINGS
To the screening question “Have you had headache
in the last year not related to a cold, flu, hangover
or head injury?” 616 (48%) subjects replied “yes”.
The estimated 1-year prevalence of migraine was
13% (n=169; 95% CI 12–14%), of TTH 33%
(n=422; 95% CI 31–34%) and of CDH 8% (n=105;
95% CI 7-9%).
583 subjects used acute medication for their
headaches. The vast majority took combination
analgesics and none used triptans. 39 subjects (3%
of the total sample) overused acute headache
medication.
None of the respondents had seen a neurologist for
headache, and none was receiving preventative
drugs.
CONCLUSIONS:
This is the first population-based estimate of the prevalence of primary headache disorders in
a country of the former Soviet Union. Migraine and tension-type headache have prevalences
similar to those found elsewhere. Chronic daily headache is somewhat more prevalent.
The study reveals that no headache service exists in the Republic of Georgia, which may
explain the high prevalence of chronic daily headache, including probable medication-overuse
headache.
Lifting The Burden
The Global Campaign to
Reduce the Burden of Headache Worldwide
A partnership in action between the World Health Organization,
World Headache Alliance, International Headache Society and European Headache Federation
Eurolight
A CONSORTIUM of
24 public bodies, patient organisations, scientific organisations,
hospitals and headache experts from 15 different European countries
Colette Andrée (CH/Luxembourg), Guy Dargent (EC/Luxembourg),
Marie-Lise Lair (Luxembourg)
A European initiative supported by a grant of the EC Public Health Executive Agency
and promoted by the Centre of Public Research Luxembourg
in partnership with Lifting The Burden
Primary headaches in Europe
It is estimated that more than 50 million Europeans suffered from migraine during the last year, and lost 180
million days from work or school. The estimated cost was in excess of € 20 billion. Data on other headache
disorders are few but the most common, tension-type headache, probably accounts for even greater losses.
Health sector policy makers are constrained in their ability to take decisions on effective measures to reduce
the impact of headache disorders – on those affected directly, on their families and colleagues, on their carers
in the case of children, and on society – because knowledge of this impact on each of these is very incomplete.
Knowledge is needed for action in Europe
Eurolight
Launched in May 2007, Eurolight is a response to this
need. Its methods were developed and tested in a
pilot study in Luxembourg (figure 1).
50
Eurolight
30
• is the first consortium of stakeholders to collect
data on headache at EU level, bringing together
relevant medical, scientific and lay organizations
• will study the general population prevalence of
headache disorders in Lithuania, a country in a
part of eastern Europe where epidemiological
data are lacking
• will survey mostly patient populations in 10
representative European countries, using similar
methods in each to produce comparable findings
throughout
• will gather qualitative as well as quantitative data
that describe impact, in a broad sense, of each
headache disorder of public-health importance:
migraine, tension-type headache and chronic
daily headache
• will assess personal suffering, consequences for
work, education and family life, and the needs for
better disease management
• will produce systematic data to complement
epidemiological evidence of the burden of
headache in Europe
• is holistic, patient-driven and
scientifically validated methods
respectful
of
Volunteered
data
Responses to
questionnaire
%
40
20
10
0
Not at all
controlled
A little
Quite well
Completely
controlled
Figure 1. Control of migraine in two population
samples: data from the Luxembourg pilot
Eurolight’s over-arching objective:
to provide a justification that
headache should be high amongst
health-care priorities in Europe
For more information:
Tel: +41 61 423 1080 Fax: +41 61 423 1082
www.eurolight-online.org
Lifting The Burden
The Global Campaign to
Reduce the Burden of Headache Worldwide
A partnership in action between the World Health Organization, World Headache Alliance,
International Headache Society and European Headache Federation
Completing the burden map
TJ Steiner (UK) and LJ Stovner (Norway), for the Global Burden Working Group
Introduction
To build knowledge of the world burden of
headache, the first objective of Lifting The
Burden, the Global Burden Working Group
has collated all existing prevalence data for
headache disorders, adding to those on
migraine already assimilated into the World
Health Report 2001. The result is headache maps
of the world, which highlight areas of very deficient
knowledge in large and populous areas.
These gaps in our knowledge should be filled, requiring
new epidemiological studies in priority areas.
Georgia
China
China is a high priority because of its
size and because the prevalence of
headache there is almost certainly
underestimated (adversely affecting the
estimate of global burden). A local
Working Group has been formed and a
protocol is under development for a
population-based survey in six regions
of China, including Tibet, each
to include urban and
rural areas.
India
In India, the prevalence of headache
disorders may be high but good
epidemiological data do not exist. This
country is also a high priority because
of its size. A local Working Group has
set out detailed proposals for a
population-based study of urban and
rural populations in and around Jaipur,
Mumbai, Kolkata and Bangalore.
The Republic of Georgia has been the
testing ground to develop a door-todoor methodology for population
surveys in countries whose infrastructure does not support other
methods of contact. A burden-ofheadache study is under analysis.
Africa
The continent of Africa is a huge area
where knowledge of the burden of
headache is almost totally lacking. A
local group in South Africa has
commenced plans for a populationbased study there, again sampling
urban and rural populations, and
acknowledging ethnic diversity which
may be relevant. If successful, these
plans will be
extended to
selected
countries
in both East
Africa and
West Africa.
Russia
This country is a large area of Europe and Asia with little knowledge of headache
burden. A local Working Group has come together with the support also of the IHS
Russian Linguistic Subcommittee. Plans are being laid for a
population-based survey sampling urban and rural populations in
22 areas of Russia which will be representative of the entire
country.
Once these epidemiological studies and estimates of burden
attributable to headache are complete, Lifting The Burden
expects to have demonstrated unequivocally that headache
disorders collectively are in the top 10 causes of disability in
the world.
Lifting The Burden
The Global Campaign to
Reduce the Burden of Headache Worldwide
A partnership in action between the World Health Organization, World Headache Alliance,
International Headache Society and European Headache Federation
Atlas of headache disorders
T Dua (Switzerland), for the Headache Atlas Working Group
Introduction
There is considerable evidence that the global burden of headache disorders is high. However, little is known
about the resources available to meet this burden. In order to fill this knowledge gap, an international survey is
being carried out within the framework of World Health Organization (WHO) Project Atlas and as part of Lifting
The Burden. The two documents previously published within this framework for neurological disorders are
Atlas: country resources for neurological disorders and Atlas: epilepsy care in the world.
Objective
The aim of this survey is to collect information on the epidemiology of headache disorders, their impact on
society, the availability of resources to provide treatment, and the current management practices worldwide. It
is envisaged that the Atlas of headache disorders will be a key tool to inform policy development and to support
national and regional advocacy initiatives.
Data collection
A group of international experts identified areas where there was a need to collect information and put together
a draft questionnaire with accompanying glossary. This questionnaire was validated and feedback from this
exercise was used to derive the final version of the questionnaire to be sent to all the countries.
The questionnaire is divided into three sections: neurologist
version, primary-care version and patient version, to be filled
by a neurologist or other secondary-care headache specialist,
a primary-care physician and a patient (or representative of a
patient advocacy group) respectively.
Multiple sources have been drawn upon to identify
respondents from the countries: members of the World
Headache Alliance, the International Headache Society and
the European Headache Federation; key members of national
neurological societies identified through the World Federation
of Neurology; contacts developed during the production of
the Neurology Atlas and Epilepsy Atlas; contacts in other
countries known to respondents; and literature search.
Data collection began in November 2006 and a total of 474
focal points have been contacted in 169 countries. Currently
we have received data from 58, 39 and 39 countries for
neurologist, primary-care and patient versions respectively.
Table 1: Data to be included in the Atlas of
Headache Disorders
•National Professional/Patient Associations
•Epidemiology
•Diagnosis and assessment
•Treatment
•Human resources
•Impact on society
•Information/data collection system
•Issues of care of people with headache disorders
Are you from a country with an absence
of data (shown in grey) and able to
assist in data collection? If so, please
contact the Lifting The Burden booth.
Data organization and presentation
Data are organized into eight major themes (table 1).
They will be presented at global and WHO region levels
in the form of maps or graphics or as written text. For
each of the themes, specific limitations will be
highlighted. These must be kept in mind when
interpreting the data.
The Atlas of headache disorders will also include brief
reviews of selected topics, which summarize medical,
lifestyle, social and economic issues affecting people
with headache disorders.
Conclusion
It is hoped that the Atlas of headache disorders will stimulate global and national programmes in the headache
field. It will be a reference for health professionals, planners and policy makers at national and international
levels, helping them plan, develop and provide better care and services for people with headache disorders
throughout the world.
Lifting The Burden
The Global Campaign to
Reduce the Burden of Headache Worldwide
A partnership in action between the World Health Organization, World Headache Alliance,
International Headache Society and European Headache Federation
Management aids for primary care
TJ Steiner (UK), for the Diagnostic Aids Working Group,
Patient Information Writing Committee and Outcome Measures Working Group
Introduction
Medical management of headache disorders, for the vast majority of people affected by them, can and should
be carried out in primary care. It does not require specialist skills. Nonetheless, non-specialists throughout the
world may have received limited training in the diagnosis and treatment of headache.
As Lifting The Burden moves towards interventional projects, planning and implementing health-care solutions
for headache in various world regions, primary-care physicians will need support to provide best care based on
timely and correct diagnosis.
Through several working groups, Lifting The Burden is developing a range of management aids expressly to
assist primary-care physicians faced with these very common disorders. The aim is to benefit both physicians
and patients. Whilst physicians are helped to deliver care more efficiently and more cost-effectively, there
should be better outcomes for the many people with headache who need medical treatment.
Diagnostic aids
Outcome measures
The Diagnostic Aids
Working Group, in
collaboration with
INTERNATIONAL CLASSIFICATION
the Chairman of
of
the IHS Classification
HEADACHE DISORDERS
Sub-committee, has
2nd edition
produced a core
cut-down version of
International Classification of Headache Disorders, 2nd
edition (ICHD-II). In time, region-specific variations will
be developed for use around the world.
Assessment of a headache disorder as a prelude to
planning best management requires more than
diagnosis: there should be some measure of its
impact on the patient’s life and lifestyle.
Patient information leaflets
There are many ways in which recurrent or
persistent headache can damage life. Finding a
simple measure to summarize these, whilst being
equally applicable to all of the common headache
disorders, is a challenge. The MIDAS instrument
developed by Stewart and Lipton has proved
extremely useful with a simple concept: it
estimates active time lost through the disabling
effect of headache, and expresses the result in a
number with intuitively meaningful units (hours).
Headache management is facilitated if the patient
understands his or her headache disorder and the
treatment being proposed for it. Compliance is improved
and a better outcome is likely.
The Headache and Lost Time (HALT) index is a
direct and close derivative of MIDAS developed by
Lifting The Burden to use wording that is more
easily translated.
Explanation takes time, which is often not available.
Whenever treatment is started, or changed, followup ensures that optimum treatment has been
established; or it recognizes that it has not, and
identifies further changes that may be needed.
Later, this Group will formulate diagnostic algorithms.
A writing group is developing a series of Patient
Information Leaflets to be handed to patients at the
time of diagnosis. The group includes an international
review panel of headache specialists, primary-care
physicians and patient representatives whose task is to
ensure cross-cultural relevance in these leaflets.
Those already produced include leaflets on each of the
four important headache disorders in primary care
(migraine, tension-type
headache, cluster
headache and
medication-overuse
headache). A fifth
explains some of the
relationships between
female hormones and
headache, which
commonly raise
questions from patients.
It is not always easy to know whether or not the
outcome achieved by an individual patient is the
best that he or she can reasonably expect. For the
non-specialist, one question that sometimes arises
is: “What further effort, in hope of a better
outcome, is justified?” A second question, which
follows if it is thought that more should be done,
may be “What is it that needs changing?”
A working group is developing the Headache
Under-Response to Treatment (HURT) index,
an outcome measure designed to aid management
by suggesting answers to these two questions. This
index is currently undergoing validation.
These management aids are published in
J Headache Pain 2007; 8 (suppl 1)
Lifting The Burden
The Global Campaign to
Reduce the Burden of Headache Worldwide
A partnership in action between the World Health Organization, World Headache Alliance,
International Headache Society and European Headache Federation
Translation protocols
Michele Peters (UK), for the Translations Working Group
Introduction
As Lifting The Burden sets
objectives and plans activities
worldwide, the documents it
develops in English must be
made accessible in many
languages. Initially 11 other
languages are given priority,
which collectively are used by
half the world (table 1).
Table 1: Campaign Languages
•Arabic
•Bengali
•Mandarin
•Hindi/Urdu
•Italian
•Japanese
•English
•French
•German
•Portuguese
•Russian
•Spanish
Figure 1: Translation Procedure
The importance of rigorous
ORIGINAL
translation of written materials
used in medical management is
increasingly recognized and
FIRST FORWARD
SECOND FORWARD
advocated [1,2]. Translation
TRANSLATION
TRANSLATION
procedures, such as those by
Guillemin et al [3], are
RECONCILIATION
HYBRID
internationally recognized and
LAY AND
underpin recommendations for BACK
TECHNICAL
REVIEW
good translation practices for
TRANSLATION
headache [1]. Qualitycontrolled translations following
QUALITY ASSESSMENT
standardized protocols increase
the likelihood of linguistic and
FINAL TRANSLATION
conceptual equivalence
between the translated
TRANSLATION REPORT
products, and are essential if
questionnaires are to be
comparable cross-culturally and
The Translations Working Group
if lay or professional
A
Lifting
The
Burden
working
group
instruments are to be of equal
was
formed
whose
members
were
value in different languages.
either translation specialists or
Documents for Translation
knowledgeable about translation
issues and the Global Campaign
Lifting the Burden creates three
(Box 1). Their task was to develop
different types of document:
protocols that would ensure the
•Lay documents (eg, patient
rigour and quality of translations
information leaflets)
whilst being pragmatic and suitable
•Technical documents including
for use in different cultures.
information for professionals
(eg, management guidelines)
•Hybrid documents aimed at
Box 1: Translations Working
people with headache but to
Group
be used either in clinical
•Michele Peters (chairman),
practice or in research (eg,
University of Oxford, Oxford, UK
outcome measures).
•José M Bertolote, World Health
Organization, Geneva,
Switzerland
•Caroline Houchin, Oxford
Outcomes, Oxford, UK
•Taj Kandoura, Oriental Institute,
University of Oxford, Oxford, UK
•Timothy J Steiner, Imperial
College London, London, UK.
The Translation Protocols
Three translation protocols were
written, one for each type of
document. The procedure for each
protocol (figure 1) aims to avoid
making translation unnecessarily
onerous yet not compromise on
rigour.
Similarities between protocols are:
•A co-ordinator who is a native
speaker of the target language
selects the translators, oversees
the translations and reports to the
Translations Working Group
•Translators are native speakers of
the target language
•At least one forward translator must
be a headache or medical expert
•Two forward semantic and
conceptual translations
•Production from these of a
consensus translated version
•A quality assessment by members
of the respective target audience
•Production of a report, including all
translated versions and any
translation difficulties.
Differences between the three
translation protocols include:
•The co-ordinator for the hybrid
translations must have technical
knowledge (ie, able to understand
the concepts underlying the
instrument to be translated) and
the co-ordinator for the technical
translations must be a headache
expert
•Production of one back translation
only for hybrid documents
•For hybrid and lay documents, the
quality assessment also includes a
linguistic review.
The Translation Procedure
All translations of Lifting The Burden
materials should follow one or other
of these protocols as closely as
possible.
References
1. Peters M, Passchier J. Translating Instruments for cross-cultural
studies in headache research. Headache 2006; 46: 82-91.
2. Wild D, Grove A, Martin M, Eremenco S, McElroy S, Verjee-Lorenz A,
Erikson P. Principles of good practice for the translation and cultural
adaptation process for patient-reported outcomes (PRO) measures:
Report of the ISPOR task force for translation and cultural adaptation.
Value in Health 2005; 8: 94-104
3. Guillemin F, Bombardier C, Beaton D. Cross-cultural adaptation of
health-related quality of life measures: literature review and proposed
guidelines. Journal of Clinical Epidemiology 1993: 46:1417-1432
Lifting The Burden
The Global Campaign to
Reduce the Burden of Headache Worldwide
A partnership in action between the World Health Organization,
World Headache Alliance, International Headache Society and European Headache Federation
A new headache service in
the Republic of Georgia
Z Katsarava (Germany/Georgia), M Kukava (Georgia), A Dzagnidze (Georgia),
E Mirvelashvili (Georgia), M Djibuti (Georgia), R Jensen (Denmark),
LJ Stovner (Norway) and TJ Steiner (UK)
A Collaboration between Lifting The Burden and the
Russian Linguistic Subcommittee of the International Headache Society
AIM: To establish a new headache service in the Republic of Georgia and investigate its impact on headacherelated disability, overall health and quality of life of people with headache.
BACKGROUND: The Republic of Georgia is selected for the first interventional project of Lifting The Burden. Its
population in 2000 was 4.4 million, 53% urban and 47% rural; 1.5 million inhabitants are in the Capital, Tbilisi.
No headache service currently exists in the country. A
recent epidemiological survey showed that the
prevalences of primary headache disorders were
similar to those in Europe and USA. It furthermore
revealed that people with headache neglect their
illness, not considering headache as a medical
problem.
PROJECT DESIGN
Three headache clinics will be established:
1.Tbilisi, Capital city with 1.5 million inhabitants: an
EHF level 2-3 clinic, with one consultant neurologist
supported by two neurologists, one nurse and one
physiotherapist
2.Batumi, city with 250,000 inhabitants: a level 1-2
clinic with one consultant neurologist supported by one
neurologist and one nurse
3.Sachkhere, town with 20,000 inhabitants: a level 1
clinic with one neurologist and one nurse.
Headache services
will be offered primarily to the inhabitants of the
catchments areas (4,000 households, or 10,000
people) of each clinic. All patients will receive cost-free
headache services for 3 months, and must then make
payment for their further care and medications. This is
the exit strategy, designed to assess sustainability.
Month 1:
First contact with doctor: history and examination,
diagnosis, treatment plan, headache diary, educational
materials, drugs if needed (domperidone and aspirin or
ibuprofen).
Month 2:
Follow-up contact with doctor: review of headache
diary, review of treatment, further drugs as required
(domperidone, aspirin or ibuprofen, triptan tablets [up
to 2 doses free, but additional doses at 2 Lari per
tablet], atenolol or propranolol or amitriptyline).
Month 3:
Follow-up contact with nurse (or doctor if necessary):
review of headache diary, drugs as for month 2.
Clinic 3
Clinic 1
Clinic 2
Evaluation
will be after 6 months and 1 year in all compliant
patients and in 10% of non-compliant patients.
Outcome variables:
1) headache days per month, recorded in headache
diaries
2) headache-related disability (lost active time) and
outcome assessed by Lifting The Burden’s HALT and
HURT indices
3) overall wellbeing assessed by SF 12
4) patient satisfaction assessed by questionnaire
developed in Glostrup Headache Centre, University
of Copenhagen
5) social benefit assessed in health economic terms
6) service quality using measures developed by
Tanaka Business School, Imperial College London
7) willingness to pay.
PRINCIPAL HYPOTHESIS:
that development of a headache service
according to EHF recommendations and
standards requires a relatively low initial
investment and results in an effective
and sustainable service which reduces
headache-related disability and improves
overall health of people with headache.
Lifting The Burden
The Global Campaign to
Reduce the Burden of Headache Worldwide
A partnership in action between the World Health Organization, World Headache Alliance,
International Headache Society and European Headache Federation
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