Launch of the ‘Cost of Disorders of the Brain in Europe’ report
“Cost of disorders of the brain in Europe 2010”1 is the direct successor of a benchmark study of the same title published in 2005.
The success of the 2005 study2, in alerting European politicians and policy makers to the prevalence and high cost of brain diseases as well as the low levels of associated research funding, demanded the publication of a follow-up report.
Both studies were commissioned by the European Brain Council (EBC)3, a co-ordinating body consisting of numerous organizations in neurology, neurosurgery, psychiatry and basic brain research (neuroscience) as well as patient groups and industrial partners.
In representing this large network of patients, doctors and scientists, the EBC is perfectly placed to work in partnership with the European Commission, the European Parliament and the World Health Organization (WHO), as well as other decision-making bodies.
Its mission is simple – to promote brain research in Europe, which the EBC believes is seriously underfunded compared to other major diseases, while also improving the treatment and quality of life of those affected by brain diseases.
As Jes Olesen, a founding member of the council and the then-President of the organization, put it in the preface of the 2005 study: “The human brain is not only the site of our personality, thoughts, feelings and other human characteristics; it is also the seat of many chronic disabling diseases. These diseases have not received the attention that has been devoted to heart disease, cancer or AIDS, but in recent years there has been a growing awareness of their importance.“
The first study – which estimated that 127 million adults were affected by disorders of the brain in the EU member states, Iceland, Norway and Switzerland in 2004, at a total cost of 386 billion euros – undoubtedly contributed significantly in increasing that awareness.
Presented to the European Commission and European parliamentarians, it was labelled a benchmark study because it was the first to attempt to combine available epidemiologic and economic evidence of disorders of the brain in an effort to estimate their total cost within a common methodological framework.
By demonstrating the large societal cost associated with brain diseases, it underlined the vital importance of developing new strategies to alleviate the burden. It also spawned a whole series of disorder-specific and country-specific reports. In 2005, indeed, according to Thomson Reuters, about 400 studies were published which included the key words “cost” “brain”.
Many important disorders and cost items, however, had not been included in the initial report due to lack of data.
The evidence base has grown appreciably over the past five years, allowing for a more accurate, thorough and wider-ranging study. The 2010 report examines 19 major groups of disorders of the brain rather than the previous 12, and also covers 514 million people in all compared to 466 million following Bulgaria’s and Romania’s accession to the European Union.
It estimates the total direct and indirect costs to European society of brain disorders has risen to 798 billion euros, affecting more than a third of the continental population.
Mood disorders – including major depression and bipolar disorder – are estimated to be the most costly diagnostic group, requiring resources of 113.405 billion euros each year, with 33.3 million sufferers.
Dementia is a close second at 105.163 billion, with more than 88 billion of that total coming in direct non-medical costs (e.g. social services, special accommodation, informal care).
Neuromuscular disorders, however, covering a wide range of condition including muscular dystrophies, cost the most per patient, at 30,052 euros annually, with each multiple sclerosis patient costing 26,974 euros.
Headaches and sleep disorders, meanwhile, only cost 285 and 348 euros respectively – but 152.8 million people are badly affected by headaches and miraines annually, while 44.9 million struggle with sleeping patterns.
The EBC, founded in 2002, is confident the updated 2010 findings will continue to inform policy-makers about the need for a continuous focus on disorders of the brain and a continuous reappraisal of pan-European and national levels of research funding to combat the rising costs associated with brain diseases.
Gustavsson, A., et al.
Andlin-Sobocki et al., 2005
The EBC’s ordinary or voting member organisation are made up of The European Federation of Neurological Sciences (EFNS), The European Association of Neurosurgical Societies (EANS), The European College of Neuropsychopharmacology (ECNP), The European Psychiatric Association (EPA), The Federation of European Neuroscience Societies (FENS), The European Federation of Neurological Associations (EFNA) and The Global Alliance for Mental Illness Advocacy Networks (GAMIAN-Europe). The pharmaceutical industry in Europe does not have a representative body for brain research and drugs for the brain. The EBC has therefore created a panel of industrial partners from the pharmaceutical and other sectors.
Three specific objectives were set out, to estimate:
the number of persons with defined disorders of the brain in Europe in 2010
the total cost per person related to each disease by specifying direct and indirect costs
the total cost per disorder and country
Who ran it?
The study, commissioned by the European Brain Council, was designed and managed by a steering committee including professors Jes Olesen (Danish Headache Centre, Department of Neurology, Glostrup University Hospital, Denmark), Hans-Ulrich Wittchen (Institute of Clinical Psychology and Psychotherapy, Dresden, Germany) and Bengt Jönsson (Stockholm School of Economics, Sweden) in collaboration with lead health economists Anders Gustavsson (Optuminsight, Stockholm, Sweden) and Mikael Svensson (Department of Economics and Statistics, Karlstad University, Sweden).
The review of epidemiological data was conducted by panels of European experts – one panel for each disorder. A health economic panel was formed to validate the study design and assist in the interpretation of data. The co-ordination of the study, review of the economic data, analysis of data and drafting of reports was conducted by the company Optuminsight, led by Anders Gustavsson.
How does the study differ from the 2005 edition?
The 2005 study – covering the year 2004 – was a landmark publication, attempting for the first time to estimate the annual cost of 12 major groups of disorders of the brain right across Europe. That report came up with a figure of 386 billion euros – effectively the equivalent of 477 billion euros today. It covered 28 countries – the EU nations plus Iceland, Norway and Switzerland – and a total population of 466 million.
The report was limited in scope due to the lack of sufficiently comprehensive epidemiological and /or economic data on several important diagnostic groups.
The 2010 study is substantially improved and revised, covering 19 major groups of disorders, including an increase range of age groups and more cost data.
The number of people covered rose to 514 million after Bulgaria and Romania joined the EU.
What are the 19 major groups of brain disorders included in the study?
The study relies on a prevalence-based approach. The total cost of disorders during 2010 was calculated by multiplying epidemiologic data (number of patients) by the available economic data (cost per patient). The epidemiologic data, focussing on prevalence of the disorder and on individual countries, was retrieved from published literature. For many disorders, country-specific data was either not available or not detailed enough. In these cases, information was extrapolated from countries with data while country-specific surveys were also performed.
To estimate costs and resource use, all relevant published original research articles from peer-reviewed journals were consulted. Studies were only included if they had sound and robust methodology for patient selection, data collection, instrumentation, statistical analysis and reporting of results. Again, where needed, data was extrapolated from countries with data to countries without.
How were costs evaluated?
Costs have been broken down into a) direct healthcare costs b) direct non-medial costs and c) indirect costs. This was to cover all resources used or lost due to the illness, irrespective of the payer. Direct healthcare costs include all goods and services related to the prevention, diagnosis and treatment, e.g. physician fees and hospitalization.
Direct non-medical costs cover other goods and services related to the disorder, e.g. social services, special accommodation and informal care.
Indirect costs cover work absences or retirement.
Generally, a) and b) represented around 60 percent of total costs, with 40 percent made up of indirect costs.
How many people suffered from brain disorders in Europe in 2010 and which were the most costly?
The total number of sufferers, technically, stands at 380 million but this figure will include double counting – many sufferers will have two or more disorders.
An individual suffering from a neuromuscular disorder will, on average cost 30,052 Euros a year, compared to 285 euros for someone with a headache. Headaches are among the most common health disorders worldwide. While most people experience mild symptoms, some attacks, like migraines, are highly disabling and come at large societal costs.
Multiple sclerosis (26,974 euros per patient), brain tumors (21,590) and psychotic disorders (18,796) are other costly examples.
Could the study have over-estimated the problem?
The authors of the study would say no. They believe, indeed, that their estimate of the costs of disorders of the brain are “very conservative”. While double counting of certain elements – and thus over-estimation – is a possibility which the authors have tried to guard against, many underestimations are a certainty. Many cost items, for instance, have not been included because of lack of data, while only limited age groups were evaluated for some disorders. Thus the estimated huge cost of adults with autism was not included due to limited data. Many other disorders, like certain neuromuscular disorders, rare genetic disorders and several neurological diseases, were not included at all.
Other elements, like the consequences of tobacco addiction and crime due to addiction to opiates, are regarded as costly but are not in the study. Appetite regulation is a neurobiological phenomenon but obesity has not been included under eating disorders.
Despite such underestimations, however, the picture is more realistic and complete than the 2005 report.
What has been the pharmaceutical industry’s role in brain disorder research since 2005?
The most burdensome brain disorders are cause by disturbances in brain chemistry rather than brain anatomy. In theory, therefore, they should be completely reversible if treated by effective drugs or specific behavioral treatments. In 2005, research into brain disorders was a favored topic among pharmaceutical corporations but this has changed for the worse.
Stricter European regulations for drugs with an effect on the central nervous system has been partly to blame, as has the industry’s disappointment over investments in brain disease medicines.
The trend of pharmaceutical companies leaving Europe in favor of the US, China and India has also undermined the industry’s private-public co-operation with the European Commission.
Why are the authors concerned about the way brain disorders are represented at Europe’s medical schools?
The study argues that the approach to the subject at medical schools and other healthcare educational institutions is “clearly outdated and not in agreement with our current state of knowledge”. It believes the great advances in psychiatry, neurology, clinical psychology and psychotherapy over recent years have not been absorbed, nor new treatments.
It also calls for “radical revisions” to curricula to impress on all health professions that one third fo the total EU population is or has been affected by disorders of the brain. It is not unreasonable, it argues, to demand that one third of the curriculum at these institutions should focus on the brain and its disorders.
How does the cost of disorders of the brain in Europe compare, say, with the United States?
Cost of illness studies suggest that, overall, health care costs are higher in the United States than in Europe. This may also indicate that this study’s key estimate of 798 billion euros tends towards underestimation rather than overestimation.
What were the authors’ specific recommendations?
The European Commission and national governments should make disorders of the brain a high priority topic and further strengthen existing program initiatives.
The current focus on mental health of the European Commission should be expanded to include all brain disorders.
Core emphasis should be laid on research into the causes and developmental pathways of disorders and their relationship in order to develop drug and psychological treatments as well as to allow for empirically based prevention.
The European Commission should review curricula and training in all health professions regarding coverage of disorders of the brain to make it more appropriate and up-to-date.
The European Commission should encourage industry and investors to engage in brain research.
All initiatives to provide improved knowledge of the prevalence and cost of brain disorders in Europe should be encouraged.
Each nation should modify these agenda points to their specific circumstances to promote the health of citizens and to contain the immense and expanding cost of disorders of the brain.