Transcript LTB posters for IHC 2007

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 partly by bringing out all of the available worldwide evidence of the burden attributable to
headache, but it is necessary also to set 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 IHS criteria for migraine or tension-type
headache (TTH), and also studies on headache in
general or 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 a
headache disorder within the last year
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 five 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 idiopathic headache in
the Republic of Georgia
Z Katsarava (Germany/Georgia), M Kukava (Georgia), E Mirvelashvili (Georgia),
A Tavadze (Georgia), A Dzagnidze (Georgia), M Djibuti (Georgia) and TJ Steiner (UK)
A Collaboration between Lifting The Burden and the
Russian Linguistic Subcommittee of the International Headache Society
BACKGROUND and AIM
The Republic of Georgia is located in the Caucasus. Its total population is about 4.4 million, 53% urban and
47% rural, with 1.5 million inhabitants in the Capital city, Tbilisi. No previous epidemiological study of headache
disorders has been carried out in countries of the former Soviet Union. The aim of this study was to estimate
the prevalences of migraine, tension-type headache (TTH) and chronic daily headache (CDH) in Georgia.
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
Prevalence of headache disorders in
the Republic of Moldova
G Pavlic (Moldova), S Odobescu (Moldova), L Rotaru (Moldova), C Craciun (Moldova),
L Ciobanu (Moldova), G Corcea (Moldova), TJ Steiner (UK), Z Katsarava (Germany)
and I Moldovanu (Moldova)
A Collaboration between Lifting The Burden and the
Russian Linguistic Subcommittee of the International Headache Society
BACKGROUND and AIM
The Republic of Moldova is a former-USSR country of 4.3 million people. No population-based epidemiological
study of headache disorders has been conducted there. The aim of this study was to estimate the one-year
prevalences of migraine, tension-type headache (TTH) and chronic daily headache (CDH) in Moldova.
PROJECT DESIGN
The methods were based on those previously tested in
Georgia. In a validation study in Tbilisi, Georgia, the response
rate to the survey questionnaire was 70%. As a diagnostic
instrument, the questionnaire had sensitivities of 89% for
migraine and 67% for TTH (overall kappa = 0.74).
Eight neurology residents trained by the principal investigator
(IM) contacted adjacent households in the Capital of Moldova,
Chisinau, and in a rural area of Hancesti. They sought data
from approximately 3,000 subjects using the questionnaire.
As a check, 10% of all subjects who reported headache were
later interviewed and examined by IM personally.
Chisinau
Hancesti
Figure 1. Prevalences of headache disorders in Moldova
25
n=2,511
% of respondents
20
15
10
5
0
All
Migraine Migraine Migraine
without with aura
aura
TTH
Infrequent Frequent
ETTH
ETTH
Chronic
TTH
CDH
PRINCIPAL FINDINGS
Of 3,165 subjects contacted, 2,511 (79%)
responded. Of these, 1,341 (53.4%)
reported headache in the last year.
Migraine was diagnosed in 440 respondents
(17.5%; 95% CI:16.1-19.1%), 382 (15.2%)
having migraine without aura and 58 (2.3%)
migraine with aura (figure 1). TTH was
diagnosed in 450 respondents (17.9%; 95%
CI: 16.5-19.5%), only 26 (1.0%) having
infrequent episodic TTH, 346 (13.8%) having
frequent episodic TTH and 78 (3.1%) having
chronic TTH. CDH of all types was diagnosed
in 119 subjects (4.7%; 95% CI: 4.0-5.6%).
CONCLUSIONS
The estimated prevalences of migraine and CDH were comparable with findings from other
countries in Europe. The prevalence of episodic TTH, however, was lower. A possible
explanation for this is that headache is not considered as a medical problem by the general
population in Moldova, and many individuals, most likely those with infrequent episodic TTH,
may not have reported occasional 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
Completing the burden map
Z Katsarava (Germany), LJ Stovner (Norway), T Dua (Switzerland)
and TJ Steiner (UK)
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 AND MOLDOVA
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.
RUSSIA
These countries of the former USSR
have been the testing ground to
develop a door-to-door methodology
for population surveys in countries
whose infra-structure does not
support other methods of contact. A
burden-of-headache study in each is
under analysis.
SOUTH 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.
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
21 of the 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
Eurolight
A CONSORTIUM of
24 public bodies, patient and scientific organizations, hospitals and
headache experts from 15 different European countries
C Andrée (Luxembourg/Switzerland) and TJ Steiner (UK)
for the Eurolight Project Steering Committee
Eurolight is a partnership activity within Lifting The Burden:
the Global Campaign to reduce the burden of headache worldwide
supported by a grant of the EC Public Health Executive Agency
and promoted by the Centre of Public Health Research, Luxembourg
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
Atlas of headache disorders
Tarun Dua (Switzerland), Lars Jacob Stovner (Norway), Gøril Bruvik Gravdahl
(Norway), Ulla Schultz (UK), Timothy J Steiner (UK) and Shekhar Saxena (Switzerland)
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 68, 47 and 43 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 Lifting The Burden.
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
Research by low and middle income countries
in the primary headache disorders
Farrah J Mateen (USA), Tarun Dua (Switzerland), Timothy J Steiner (UK) and Shekhar Saxena
(Switzerland)
INTRODUCTION
Headache is ubiquitous, and a significant and largely
unaddressed burden of ill health and disability in all
countries. Yet, most research on headache disorders
comes from high income countries. The contribution
of low and middle income (LAMI) countries to research
in this field has not been characterized.
A first step in Lifting The Burden is to identify and fill
knowledge gaps. Therefore our aim was to determine
the type and amount of research on primary headache
disorders in LAMI countries over the past decade.
METHODS
We searched 68 internationally-accessible databases
using the keywords headache, headache disorders,
primary and migraine for the 10 years 1997 to 2006.
All clinical research, case series, clinical trials and
retrospective studies in any language were included,
provided that at least an abstract was available in
English. Basic science articles, animal studies, single
case reports and publications which did not present
new clinical research data (commentaries, historical
articles, reviews, conference summaries, editorials,
reviews and guidelines) were excluded.
Country classification into four groups according to
gross national income per capita was based on World
Bank categorization (July 2006): low (US$ 875 or
less), lower middle (US$ 876-3,465), upper middle
(US$ 3,466-10,725) or high (US$ 10,726 or more).
Each LAMI country name was used as a search term.
We also checked the institutional affiliations of
corresponding authors and geographic regions where
work was conducted. We ascertained that each
abstract (a) derived from that particular country (and
was not about relocated migrants from that country)
and (b) pertained to primary headache as defined by
ICD-10 (not headache as a symptom).
Multi-centre studies with data contributions from
different countries were counted multiple times,
once for each country that participated.
RESULTS
A total of 227 publications were found, mostly from
three countries: Brazil (57), Turkey (31) and Iran
(26). Of a possible 151 LAMI countries, 32 were
represented (see table). Of the 54 low income
countries, only 8 had produced research in primary
headache disorders and, of the 24 publications,
primary authors of two were from institutions in
high income countries.
Most articles were found via PubMed (62.5%), but
many were indexed only in Embase (15%) or other
databases (22.5%).
Clinical studies of drug treatment accounted for
14.5% of all LAMI research, whereas clinical studies
not involving drugs made up the largest proportion:
40.5% (Figure 1). Of all LAMI publications, migraine
was the focus of 49%, paediatric populations were
exclusively studied in 15%; epidemiological studies
accounted for 37%; economic or health services
capacity research made up only 7.9%.
40%
37%
Epidemiological
Economic/health
services
Clinical study
drug-related
Clinical study not
drug-related
8%
15%
Figure 1. Theme of publications on primary headache
disorders from low- and middle-income countries, 1997-2006
Countries in
the income
group
(n)
Countries
contributing
to headache
research
(n [%] )
Articles
(n)
54
8 [14.8]
24
Lower middle
income
58
13 [22.4]
127
Upper middle
income
39
11 [28.2]
76
Low income
CONCLUSIONS
The contribution of LAMI countries to headache
research is small and derived from few countries.
Therapy of headache disorders accounts for
approximately a third of the published work.
This survey was limited to studies with at least
abstracts in English. Other LAMI country work
may exist in non-English databases or nonindexed journals.
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
the Chairman of
INTERNATIONAL CLASSIFICATION
the IHS Classification
of
Sub-committee, has
HEADACHE DISORDERS
produced a core
2nd edition
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-Attributed 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 often is 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 the outcome
achieved by an individual patient is the best that he
or she can reasonably expect. For the nonspecialist, one question that sometimes arises is:
“What further effort, in hope of a better outcome,
is justified?” A second question, which may follow
when it is thought that more should be done, is
“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
European principles of management of
common headache disorders in primary care
TJ Steiner (UK), K Paemeleire (Belgium), R Jensen (Denmark), D Valade (France),
L Savi (Italy), MJA Lainez (Spain), H-C Diener (Germany), P Martelletti (Italy)
and EGM Couturier (The Netherlands)
A Collaboration between Lifting The Burden and the
European Headache Federation
INTRODUCTION
Headache disorders are amongst the top 10 causes of disability in Europe. Four of these are important in
primary care because they are common and responsible for almost all headache-related burden. Management
of these, 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, it is recognized that non-specialists throughout Europe may have
received limited training in the diagnosis and treatment of headache.
PURPOSE
DESIGN and USAGE
These management principles1 are the output of a
collaboration between the European Headache
Federation (EHF) and Lifting The Burden.
The principles are likely to be most useful if they are
read through at least once in their entirety, but are
set out in 12 stand-alone management aids in three
sections:
Their purpose is to help primary-care physicians
correctly diagnose these few disorders, manage them
well, recognize warnings of serious headache
disorders and refer for specialist care when
appropriate. They aim to give straightforward, easilyfollowed guidance to physicians who are assumed to
be non-expert.
They acknowledge that availability and regulatory
approval of drugs, and reimbursement policies, vary
from country to country. For that reason, different
possible options are set out wherever appropriate.
Otherwise, the emphasis is on unambiguous advice.
DEVELOPMENT
The process was review of all treatment guidelines in
use in Europe, published or otherwise available in
English, and harmonization by selection of whatever
recommendations within them carried most weight.
Evidence-based recommendations were preferred to
those without explicit supporting evidence, whilst
discordance between recommendations was resolved
through reference to original evidence or, where this
was lacking, through consensus of expert opinion.
We hope for benefits for both patients and
physicians. In the first case, there should
be better outcomes for the many people
with
headache
who
need
medical
treatment. In the second, physicians are
helped to deliver appropriate care more
efficiently and more cost-effectively.
Guides to diagnosis
(some parts of these will need to be assimilated into
routine practice, whereas other parts can serve as
check lists and aide-mémoires)
1. Headache as a presenting complaint
2. Diagnosis of headache
3. Typical features of the common headache
disorders
4. Differential diagnosis of the common
headache disorders
Guides to management
(these are information sources to be referred to
once the diagnosis has been made; management aid
#6 includes guidance on information to patients)
5.
6.
7.
8.
9.
General aspects of headache management
Advice to patients
Medical management of acute migraine
Prophylactic management of migraine
Medical management of tension-type
headache
10. Medical management of cluster headache
11. Management of medication-overuse
headache
Guide to referral
(a reference and reminder)
12. Headache management in primary care:
when to refer
1. TJ Steiner, K Paemeleire, R Jensen, D Valade, L Savi, MJA
Lainez, H-C Diener, P Martelletti, EGM Couturier. European
principles of management of common headache disorders in
primary care. J Headache Pain 2007; 8 suppl 1: S3-S21.
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 organisation of headache services
TJ Steiner (UK) and R Jensen (Denmark)
on behalf of European Headache Federation and Lifting The Burden
A Collaboration between Lifting The Burden and the
European Headache Federation
INTRODUCTION
Prevalence statistics reveal that, for every 1,000,000 people in Europe, 110,000 adults have migraine (90,000
with significantly disability), 600,000 have occasional other headaches (mostly episodic tension-type headache
and less disabled), and 30,000 have headache every day (most of whom are significantly disabled)1-3. In other
words, for every 1,000,000 of the population of a country, 120,000 adults have disabling headache and are
likely to benefit from good headache care. The child population (for whom fewer data exist) have needs also.
These numbers are a huge challenge to adequate health-care provision. It is a clear and inescapable conclusion
that most headache management belongs in primary care. There is no clinical reason to counter this.
NEEDS ASSESSMENT
Figure 2. Headache care needs assessment
in specialist care for every 1,000,000 people
Assumptions
• needs arise in the child population at half the rate
per head of adults
• “demand” is expressed by only 50% of those in
need (ie, 50% who might benefit from medical
care do not seek it)
• minimum consultation need is 1 hr in every 2 yr
(30 min for first visit and 30 min total for 1-3
follow-up appointments) per adult patient and
double this per child patient (ie, 1 hour/year)
• no wastage occurs through failures by patients to
attend appointments
• 1 day is 7 hours and 1 week is 4 days of patientcontact time (1 day per week is required for
administration, audit and continuing professional
development) and 48 weeks are worked per year
Figure 1. Headache care needs assessment
overall for every 1,000,000 people
Estimated number of
adults/children with
headache-care needs
Expected demand
(hr/wk of medical
consultation)
120,000/15,000
780 hours
(28 full-time
equivalents [FTEs])
Further assumptions for specialist care
• 10% of presenting patients may benefit from
specialist referral4
• minimum consultation need is 1 hr/yr per adult
(45 min for first visit and 15 min for follow-up)
and 1.25 hr/yr per child patient
• need for inpatient management is very low
(<1% of presenting patients) and can be ignored
Estimated number of
adults/children with
headache-care needs
Expected demand
(hr/wk of medical
consultation)
12,000/1,500
140 hours
(5 FTEs)
MEETING NEEDS: proposals for consultation
Headache services should be organized on three
levels:
Level 1. Headache primary care: meeting the
needs of 90% of people consulting for headache.
One FTE physician can provide level 1 care for a
population of 35,000, and act as gatekeeper to:
Level 2. Headache clinics: trained physicians in
primary or secondary care providing more
advanced care to 10% of patients seen at level 1.
One FTE physician can provide level 2 care for a
population of 200,000, referring as necessary to:
Level 3. Specialist headache centres: hospitalbased with full time inpatient facilities and access
to equipment and specialists in other disciplines for
diagnosis and management of the underlying
causes of all secondary headache disorders. Level 3
provides advanced care to 10% of patients seen at
level 2 and supports acute services for patients
presenting with headache. One FTE physician can
provide level 3 care for a population of 2,000,000.
1. Steiner TJ, Scher AI, Stewart WF, Kolodner K, Liberman J, Lipton RB.
Cephalalgia 2003; 23: 519-527.
2. Stovner L, Hagen K, Jensen R, Katsarava Z, Lipton R, Scher A,
Steiner T, Zwart JA: Cephalalgia 2007; 27: 193-210.
3. Lipton RB, Scher AI, Steiner TJ, Kolodner K, Liberman J, Stewart WF.
Neurology 2003; 60: 441-448.
4. Laughey WF, Holmes WF, MacGregor AE, Sawyer JPC. Cephalalgia
1999; 19: 328-329.
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 is about 4.4 million, 53% urban and 47% rural; 1.5 million inhabitants are in the Capital city, 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, the 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, a city with 250,000 inhabitants: a level 1-2
clinic with one consultant neurologist supported by one
neurologist and one nurse
3.Sachkhere, a 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 within
Lifting The Burden by Department of Public Health,
University of Oxford
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.