5.5.3. OTHER DISEASES
Eating disorders are a serious and complex problem as
defined by the World Health Organization (WHO) that stated : “[…] eating
disorders are now seen in developing as well as developed countries and may
even manifest themselves in the face of apparent starvation. It is believed
that a contribution in the rise of eating disorders is the exposure to Western
media and its influence on desirable body characteristics” (WHO, 2003).
Eating disorders such as anorexia and bulimia occupying
during adolescence and early adulthood are characterised by an unhealthy
relationship with food, abnormal weight loss, difficulties in controlling the
weight, and abnormal attitudes (Berkman et al, 2007). An anorectic or bulimic
person experiences herself/himself as fat. Normally, people have between 15 and
18 percent body fat, but not less than 10 percent body fat as it is significant
for eating disordered persons (National Centre for Eating Disorders, 2008).
Eating disorders are more common in adolescents and females (Levey, 2006).
Levey (2006) notes that more than 90% of sick people are female; nonetheless,
10% of cases occur in male. Both anorexia and bulimia begin mostly in
adolescence in the age of 13 to 18; however, several cases appear in childhood
as well as in adulthood (Levey, 2006).
Anorexia as “appetite loss of nervous origins” shows beside an
avoidance of highly-caloric food, self-induced vomiting, drug abuse and
excessive exercise a mortality rate of 5,6% per decade (Misra et al, 2004; Gupta,
1995). Anorexia is a psychological illness that has an impact on mental and
physical health, and is therefore classified in the Diagnostic and Statistical
Manual of Mental Disorders, Fourth Edition (DSMR-IV) which uses clusters of
symptoms to diagnose anorexia. A person is sick, if the body
weight is less than 85% of the expected weight. Diseased people are
afraid to gain weight or becoming fat, they have additionally a wrong body
image as well as amenorrhoea (The Cleveland Clinic Foundation, 2003a).
Bulimia has a similar description in the DSMR-IV classification.
People with bulimia pass through episodes of binge eating and assume themselves
to be obese. Additionally, they need compensatory strategies to cope their
problems, and their self-evaluation is over influenced by body shape and
weight. Finally, ill people do not exclusively suffer from disturbance during
episodes of anorexia (The Cleveland Clinic Foundation, 2003b).
Qualitative methods for measuring eating disorders
Qualitative studies with a small sample size allow a
well-grounded insight into a person or a group of persons, but forbid
conclusions on population level. Several population groups can be used as
sample group (students in high school or college, or athletes), and researches
have to decide which group is the best to identify those with an eating
disorder (Alexander and Rigby, in press). Mostly, qualitative studies are
cross-sectional studies and therefore are not able to identify time trends and
changes over time. Several measurement methods survey qualitative data, in
doing so the Eating Disorder Examination Questionnaire (EDE-Q) is one example.
The EDE-Q is a self-report questionnaire which is widely instituted in
psychiatry and behavioural science to appreciate key attitudes as well as behavioural
features (Luce et al, 2008). Finally, qualitative data and qualitative
measurement methods do not allow representative conclusions about prevalence
It is difficult to measure incidence and prevalence. One method,
which is able to provide a satisfying data basis, is a systematic review of
literature that can base on medline and/or other accessible national or
international published data source or reference list of articles (Berkman et
al, 2007; Hoek and van Hoeken, 2003).
Reviewed articles and studies by Hoek and van Hoeken
(2003) for several Western and northern European countries (Sweden, United
Kingdom, Scotland and Wales, Switzerland, Netherlands) emphasise the upward
trend in incidence of anorexia since the 1950s, whereas the highest and linear
increase among 15-24-year-old females was noticed from 1935 to 1989
It should be emphasised that the evidence level for
reviewed studies is predominantly moderate and barely sufficient yet (Berkman
et al, 2007). Alexander and Rigby (in press) noticed data inconsistencies among
research studies and surveys concerning generalisation, research design, sample
size, and a different use of measurement methods. Therefore, data resulted from
literature reviews should be carefully used to compare data and the
state-of-art between countries.
On national level, limited data are mostly available from hospital registers and practitioners. Hospital registers and
information from practitioners, however, consist of data for persons with a
diagnosed eating disorder and do not provide information (prevalence and
incidence) about the whole risk group (Alexander and Rigby, in press). Because
of it, these data sources are unlikely to indicate the complete prevalence and
incidence of eating disorders. Some national data are surveyed in certain
European countries, but a European Union-wide data analysis and comparison of
data is currently not available. In that fact, there is really a paucity of
data on national as well as at European/international level (Alexander et al,
HBSC (Health Behaviour in School Aged Children) and is
a cross-national research study carried out by the WHO Regional Office for Europe and was realised for the sixth time in 2001/2002 (WHO, 2004). A lot of European
Union (EU) Member States, non-EU Member States as well as the USA and Canada
participated (Finland, Norway, Austria, Belgium (French), Hungary, Israel,
Scotland, Spain, Sweden, Switzerland, Wales, Denmark, Canada, Latvia, Poland,
Belgium (Flemish), Czech Republic, Estonia, France,
Germany, Greenland, Lithuania, Russia, Slovak Republic, England, Greece,
Portugal, Republic of Ireland, USA, Macedonia, Netherlands, Italy, Croatia,
Malta, Slovenia and Ukraine).
The more recent project “Challenges and Findings in
Measuring the Behavioural Determinants of Obesity in Children in Europe; Volume 2: Available
Health Information on Behavioural Determinants of Obesity in Children in
Europe” written by Alexander et al (in press) deals with eating disorders and
therefore collected data in participated European countries. The overview in
table 18.104.22.168.2.1 illustrates the limited number of data, surveys and
treatments being available. It becomes obvious that in some countries data were
measured within national surveys, whereas for other countries data do not exist
allowing statements about prevalence and incidence of anorexia and bulimia. The
European project provides information about anorexia and bulimia for various
countries including 23 EU and non-EU countries (Austria, Bulgaria, Croatia,
Cyprus, Czech Republic, Denmark, Estonia, Finland, France,
Germany, Greece, Italy, Liechtenstein, Lithuania, Luxembourg, Macedonia, The
Netherlands, Norway, Poland, Romania, Slovenia, Sweden and Turkey). The EU27
Member States as well as EU Candidate States (Croatia, Macedonia, Turkey) and Norway participated in the project.
22.214.171.124.1 Overview of data availability in Europe
Table 126.96.36.199.2.1: Available data about anorexia and bulimia in European countries
(taken from: Alexander, Rigby, Frazzica, Sjöström, Hillger, Neumann, Kirch :
Challenges and Findings in Measuring the Behavioural Determinants of Obesity in
Children in Europe; Volume 2: Available Health Information on Behavioural
Determinants of Obesity in Children in Europe)
A third European study titled Healthy Lifestyle in Europe by
Nutrition in Adolescence (HELENA started in 2005, ends in 2008) aims at
understanding and enhancing nutritional and lifestyle habits of adolescents in
Europe, and tries to get a better identification of adolescents at risk of
eating disorders (Austrian Council Presidency, 2008). The expected results
shall illustrate dietary habits/nutritional status, the amount of physical
activity as well as the prevalence of particular high priority health
problems of European adolescents between 13 and 16 years of age (3000
adolescents). Findings are assessed through cross-sectional studies
accomplished in different countries (10 EU Member States: Austria, Belgium, France, Germany, Greece, Hungary, Italy, Spain, Sweden, and United Kingdom). Furthermore, a Lifestyle Education Programme will be developed and tested
improving eating and lifestyle habits of this subpopulation group, and last but
not least a number of healthy foods will be developed and marketing strategies
will be identified. However, results are not published yet (De Henauw et al,
188.8.131.52.3. Data description
Reviewed articles and studies by Hoek and van Hoeken
(2003) for several Western and northern European countries (Sweden, United
Kingdom, Scotland and Wales, Switzerland, Netherlands) emphasise the upward
trend in the incidence of anorexia since the 1950s, whereas the highest and
linear increase among 15-24-year-old females was noticed from 1935 to 1989.
Also the incidence rate among 10-14-year-old females has risen since the 1950s
although, the incidence rate for women and men older than 25 remains low (Hoek
and van Hoeken, 2003). An average prevalence rate of 0.3% for young females in
Western Europe and the United States was noticed. The prevalence rate for
bulimia is 1% for 15-24-year-old females. 0.1% of young men are bulimic
although the number is rising (Hoek and van Hoeken, 2003). Time trends in
incidence reveal that bulimia affects 30 per 100.000 females, whereby the
incidence rate has remained relatively constant until 1990 (Hoek and van
Hoeken, 2003). Hoek and van Hoeken (2003) reported a significant and threshold
increase in bulimia for 10-39-year-old women during 1988-1993. The highest risk
20–24-year-old females) shows an incidence rate of 81,1 per 100.000 (Hoek and van
The HBSC (Health Behaviour in School Aged Children)
survey showed that 22% of boys and 38% of girls are dissatisfied with their
body (adolescents with overweight are included). Additionally, 36% of girls and
22% of boys feel dissatisfied with their weight. Girls’ dissatisfaction
increases with age: 28% for 11-year-olds, 37% for 13-year-olds and 42% for
15-year-olds. 18% of girls diet or control their weight and the number of girls
increases with age: from 12% for 11-year-olds to 23% for 15-year-olds.
Adolescents show gender differences in dissatisfaction with body
weight, dieting and weight control, with a higher level for girls
(18%) than for boys (8%). Again, dissatisfaction increases with age: 12% for
11-year-olds, 23% for 15-year-olds. The correlation between dissatisfaction with
body size and dieting and weight control behaviour is not clear, because the
results estimate that 18% of girls control their weight but 36% feel
dissatisfied with their weight. Once again, the level increases with age (WHO,
Berkman et al (2007) reviewed various
surveys, which were published from 1980 to 2005 and explain the results for
some European countries (Sweden, United Kingdom, Germany, Norway and Denmark). Thus, data from 62 articles (out of 32 separate studies) were reviewed. The
review analysed indicators such as mortality (death, suicide), diagnostic,
personality disorders, biomarkers, substance abuse and eating-related outcomes
for men and women separately and represents an overview on the availability of
data as well as about lack of data. From this survey, it appears that several
studies were follow-up measurements of 5 or 10 years allowing conclusions about
changes in incidence, prevalence and progress. With this regard, a prospective
cohort study with a 5 year follow-up for Goteborg shows that 50% of anorectic
184.108.40.206.4. Risk factors and
vulnerable population groups
Eating disorders are rare in population and affect
particularly adolescents and young women (Gupta, 1995). Young girls and boys follow
the social-cultural trend to be thin. Children, adolescents and early adults
are a particularly vulnerable subpopulation group, because they are easy to
influence. Especially during puberty, adolescents try to find their place in
society and community. Instead of circulating reliable information about
eating, body weight and weight loss, various magazines and
television programmes frequently promote too small body
weight and thinness and demonstrate how to lose weight and body fat.
The likelihood of an individual eating disorder depends on
well as on individual resources (Berkman et al, 2007). Social pressure to be
thin, fitter and look aesthetically better are critically important risk
factors influencing personal health and may contribute to fall ill. Eating
disorders are not only influenced by social factors; actually anorexia and
bulimia are caused by several conditions including psychological factors, interpersonal
factors, social factors as well as biological factors. In other words, eating
disorders are caused by an environment where it is easy to become anorectic or
self-esteem, feelings of inadequacy or lack of control in life, depression, anxiety,
anger, or loneliness;
with family and personal relationships, difficulty in expressing emotions and
feelings, being teased or ridiculed, physical or sexual abuse;
pressure that glorify “thinness” and the “perfect body”; and
in the brain that control hunger, appetite, and digestion; genetic factor.
As a result, ill people commonly experience difficulties
which they try to cope with extreme dieting, physical
activity, drug abuse (laxatives, diuretics, enemas or other
medications) and self-induced vomiting to gain control over events and
emotions; thereby, unhealthy behaviour may cause diseases such as osteoporosis,
osteoarthritis, orthopaedic injuries and stress fractures, ruptured oesophagus,
high blood pressure, type 2 diabetes, menstrual dysfunction, amenorrhea and potential
infertility (Gupta, 1995). Therefore, an early diagnosis and the access to
treatments are necessary to enable adolescents to have a normal and
well-ordered life and development.
The influence of media and internet in adolescence
(pro-eating disorder websites and professional websites) has been highlighted
as a possible source of information on diet and weight loss (Harper et al,
2008). Websites publishing well-grounded and professional information are
helpful; however, adolescents dissatisfied with their body tend to pick up
information on websites promoting eating disorders. Generally, pro-eating
disorder websites may affect body image and eating disturbance more negatively
than professional websites (Harper et al, 2008). This emphasises the need for
more professional websites.
220.127.116.11.5. Control tools and policies
The WHO Regional Office for Europe implemented a strategy
for health in childhood and adolescence for 36 Member States in the WHO
European Region. The strategy aims at assisting the States in formulating
policies and programmes. The WHO Regional Office for Europe points out main
factors to guarantee a successful implementation of policy and intervention
accurate and reliable information;
without implementation is meaningless;
children in designing and implementing programmes and policies;
clear and ambiguous policy goals and programme objectives;
educational approach in a wide set of initiatives using full set of policy
instruments available to decision-makers;
important health sector, coordinate work across ministries; and
into account culture, attitudes and beliefs of children;
18.104.22.168.6. Future developments
Due to the fact that eating disorders are an increasing
problem in Western and European countries, actions and initiatives are
absolutely essential. In this regard, the beginning of implementation strategies is a task of utmost
importance for national and international public health and policy. In most
cases, actions and programmes concern mental health and do not focus on eating
disorders. National and international school nutrition policy as well as
implementiable programmes shall take into account the current research,
theories and practice. Furthermore, policy makers should regularly review the
effectiveness of programmes and activities, in order to guarantee that
programmes and activities follow specified guidelines.
Further efforts are needed to regularly update data
regarding eating disorders. Routinely analysed data are of particular importance, as
they can identify time trends and changes over time. Longitudinal studies and
population statistics give well-grounded information on prevalence, incidence
and progress of anorexia and bulimia. Routinely analysed data are essential for
policy making and actions, whilst study results should strongly influence the political
work at national and international level.
Effective prevention is beneficial in reducing the
number of eating disorders and therefore needs to be integrated in people’s
life in order to influence lifestyle and also promote healthy life as well as
lifestyle changes. It is well-known that primary and secondary prevention are
cost-saving and in the interest of all of us, particularly of families and
children. Prevention can be named as a strategy with long-term benefits for
individuals, health systems and society. For example, nutrition education
programmes as much as school-based intervention and prevention activities play
an important role in promoting healthy lifelong eating and in informing
parents, educators, health care providers, children and adolescents about: what
are eating disorders, how to prevent and medicate anorexia and bulimia.
Therefore, governments are obliged to look for support and should also fund and
coordinate education prevention programmes.
Parents themselves play an important role in eating
disorder prevention. They should take into account certain behavioural rules: prohibit
teasing about body shape and size; emphasize fitness; praise children for who
they are; encourage healthy eating; don’t forbid certain foods; make mealtime
pleasant; get help when appropriate; if a child is bound and determined to
diet, get a physician involved to supervise the effort; promote physical
activity; talk to your children about the normal body changes
expected at puberty; inoculate kids against media manipulation (Anorexia
Nervosa and Related Eating Disorders Inc, 2005).
In the future, the European Commission should support
activities to measure disordered eating in Europe and should, moreover,
implement a comparable health monitoring system at European Union level. We
must bear in mind that national and international health monitoring systems and
health promotion systems are of utmost importance.
Alexander D, Rigby M, (in press, due January 2009): Challenges and
Findings in Measuring the Behavioural Determinants of Obesity in Children in Europe; Volume 1: The Public Health Challenge of Measuring the Nutritional and Physical
activity Behaviour of Children and Adolescents, in press.
Alexander D, Rigby M, Frazzica R.G, Sjöström M, Hillger C, Neumann G,
Kirch W (in press, due January 2009): Challenges and Findings in Measuring the
Behavioural Determinants of Obesity in Children in Europe; Volume 2: Available
Health Information on Behavioural Determinants of Obesity in Children in
Europe, in press
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Schizophrenia and disorders of the schizophrenia
Schizophrenia (ICD-10/F20) is a relapsing mental disorder frequently
leading to severe disability with disease onset usually in early adulthood. The
clinical picture includes a range of distinctive symptoms such as delusions,
hallucinations, behavioural dysfunction and cognitive deficits as for instance
disorganized thinking. Disorders of the schizophrenia spectrum are coded
Schizophrenia is a
long-lasting disorder with an early start, and thus a major contributor to
DALYs (Disability Adjusted Life Years) and YLDs (Years Lived with Disability).
People with schizophrenia spectrum disorders have a high level of excess
mortality due to treatable physical disorders. There is a huge gap between the
need for treatment of schizophrenia and access or utilization of treatment
which is connected with the stigma related to schizophrenia.
Prevalence and Incidence
According to a systematic review (Saha et al, 2005) of prevalence data
evaluated in 188 epidemiological studies the median point prevalence was 4.6
per 1000, period prevalence 3.3 per 1000, lifetime prevalence 4.0 per 1000 and
lifetime morbid risk 7.2 per 1000, respectively. Based on combined estimates
there was no significant gender difference, as well as no effect of urban,
rural, and mixed habitation area. However, the prevalence was significantly
increased for migrants compared to native-born individuals (ratio 1.84), and
lower in the least developed countries. Although there was the long-term
persistent belief that schizophrenia occurs in about 1% of the population,
independent of gender (with the exception of an earlier age of first onset in
males) and place of living and that it remains stable over time, there is new
evidence of a substantial difference between the incidence in male and female
populations (male:female ratio = 1.4); moreover, not only migrants but also
people born in urban areas show a higher incidence. The data on fluctuation
across time are controversial and demand further evaluation (McGrath, 2006).
According to the fact sheet of the WHO Mental Health Report, 7 per
1000 suffer from schizophrenia in the WHO European Region (WHO, 2001a). With
regards to the population of the EU27 countries (495 128 529 inhabitants,
status on February 22, 2008) the calculated prevalence of schizophrenia should
be 3 465 899 (http://epp.eurostat.ec.europa.eu). Since relapses are
frequent, schizophrenia is associated with repeated hospital stays and accounts
for a remarkable percentage of all permanently disabled people especially in
younger ages, and an increased death rate from natural and unnatural causes
(premature deaths). About 10 percent of affected people commit suicide. Thus,
suicide accounts for 28% of the excess mortality and is the largest single
cause contributing to the increased death rate. The other main causes of
mortality are due to the high psychiatric and somatic co-morbidity
(predominantly addiction and the metabolic syndrome) (Brown et al, 1997;
Saha et al, 2007).
Aetiology – Symptoms – Course of disease
The aetiology is only partly elucidated. There is evidence for a
multi-factorial pathogenesis including genetic deviations and functional
disturbances of the brain. Therefore, and due to the multitude of clinical
disease course types, one should rather speak of the “group of schizophrenias”
instead of “schizophrenia”. The first onset of this disorder occurs
predominantly in late adolescence and early adulthood preceded by a prodromal
period of up to 5 years characterized by unspecific symptoms. The course of the
disease is quite variable; about one quarter of the patients exhibits only one
acute schizophrenic episode, an additional third shows a chronic progressive
course, the majority has recurrent acute episodes (relapses) typically
characterized by exacerbation of psychosis and need of rehospitalisation, and with more or less
residual symptoms in the phases between the recurrent acute episodes (Marneros
et al, 1991). This can lead to significant impairment in psychosocial
functioning, in particular in maintaining social contacts and functioning in
Treatment and treatment gaps
During the past decades, there have been significant advances in the
treatment of schizophrenia. Medications (antipsychotics) improve symptoms,
while structured psychosocial treatments allow a remarkable fraction of
severely ill people to live successfully in the community and improve their
social functioning. Unfortunately, a significant percentage of people with
schizophrenia are not receiving appropriate care according to evidence based
knowledge (Lehman et al, 1998). According to calculated estimates based on the
lifetime prevalence rate, the service utilization rates as reported in
community-based psychiatric epidemiology studies, and the population size aged
> 15 , the regional treatment gap (median untreated rate = remaining
untreated or not adequately treated although effective treatments exist) for
schizophrenia and non-affective psychosis accounts for 32.2% world wide, of
which 17.8% in the WHO European Region (Kohn et al, 2004). Evidence indicates
that there is considerably more unmet need for psychotherapeutic than
pharmacological treatments (Lehman et al, 2003). Apart from the inadequacy or
unavailability of treatment, people with schizophrenia sometimes do not get the
help needed because they do not seek it, fearing the stigma associated with
mental illness and especially with schizophrenia (Wrigley et al, 2005). The
quality of psychiatric care differs between European countries. Institutional
care still dominates in the European Region; in a quarter of the EU countries
recently studied, community based mental health services were not provided
Burden of disease
Compared to other psychiatric disorders the greatest
amount of expenditures of the health care system is due to schizophrenia which affords
relatively long stays in hospital during the acute episode and frequent
re-hospitalisation. The economic burden caused by schizophrenia exceeds the
direct treatment costs due to remarkable
unemployment rates and disability pensions, as well as increased reliance on
social care and welfare support (Andlin-Sobocki et al, 2005).
Schizophrenia belongs to the ten leading causes of disability adjusted
life years for the 15 to 44 age group, and it ranks third on the list of leading
causes of years lived with disability (WHO, 2001b).
22.214.171.124.2. Data Sources
There are no comprehensive national or European data
available focusing on the prevalence and incidence of schizophrenia as a single
diagnosis. Available data summarize prevalence and incidence rates for mental
disorders as a whole. The calculated estimates for schizophrenia in the
majority of epidemiological studies are based on a consistent morbidity risk
over the life span of 1% of the population.
In most studies incidence rates are based on data of
first admission to or first contact with psychiatric services of patients with
the diagnosis of schizophrenia; patients not receiving specialized psychiatric
care (none at all or treated by general practitioners) are only included in few
studies. With regard to lacking national registries for psychiatric disorders
in most of the European countries, the first admission data may underestimate
the need for care in schizophrenia and the burden of the disease. In addition –
even in times of international classification systems – the divergent criteria
used to identify persons with schizophrenia may still be an important source of
variation in incidence and prevalence data (Lange et al, 2002). A certain
degree of reluctance in diagnosing schizophrenia – especially in
non-psychiatric services – with respect to the stigmatizing label of this
diagnosis, as well as an unknown percentage of individuals remaining
undiagnosed and untreated may further influence the reliability of incidence
rates. The renaming of “Schizophrenia” to “Integration Disorder” in Japan led to an increased rate of diagnosis (Sato, 2006).
The data concerning morbidity rates (European Hospital
Morbidity Database HMDB) with respect to hospital admissions due to ICD-10/F20,
i.e. the chapter including schizophrenia, are not complete for all EU25/EU27
countries, not even the EU15. Although most WHO-data are based on diagnosis
according to ICD10 classification (the majority of data is derived from the year
2005), data from countries like France and Germany are classified according to
ISHMT (International shortlist for hospital morbidity tabulation). The WHO data
cover more European countries but also not all of the EU27countries (Estonia, Greece, Malta, and Sweden are missing). It summarizes, however, the ICD-10 diagnoses F20 –
F29 based on different diagnostic classification levels. Data provided by
EUROSTAT on discharges, admission rates and lengths of hospital stays show
deviations from the data published by the WHO which we are not able to explain.
All available data do not take into account the differences in the national
healthcare systems. Hence, the broad range of days in hospital for example may
in part be the consequence of the differences between European mental health
Statistics based only on hospital morbidity data yet
underestimate the actual prevalence of schizophrenia since about 80% of
patients are treated in settings outside the hospital.
Data on the outpatient sector and on rehabilitation are
not covered in the European databases. With regard to the trend towards
community based care, the lack of respective data means a relevant gap of
information on the care of patients with schizophrenia.
Inter-country comparison data on mortality for selected
causes of death are not even available for all EU15 countries. WHO mortality
rates are available for schizophrenia (ICD-10/F20). They are listed in the
European Detailed Mortality Database (DMDE) but are not differentiated
according to natural and unnatural deaths, and no definition is given for a
death “caused” by schizophrenia. Other data sources like EUROSTAT do not
provide data restricted to schizophrenia (ICD-10/F20) but focus on an even
broader diagnostic groups of psychiatric disorders. In general, the quality of
cause-of-death information is questionable since the accuracy of national
statistics, as well as the coding quality, are inconsistent. Schizophrenia
itself is no fatal disease although it is associated with an increased mortality
mainly caused by co-morbid disorders and suicide (Saha et al, 2007). Databases
on suicides do not allow for relating the deaths to underlying conditions like
schizophrenia. Therefore, these mortality data have to be interpreted with
The main group of substances applied for treating
schizophrenia and relapse prevention are antipsychotics. In general there are
little accurate comparative data on prescribing patterns and respective
prescription data do not reflect the actual use in patients with schizophrenia
since these drugs are applied also to treat other disorders, and limited data
are available on antipsychotic medication applied during hospital stays.
WHO-data on the intensity of use of pharmaceuticals are
principally based on defined daily doses or DDD, and a comparative standard is
emerging based on DDD per 1000 inhabitants per day. Compilation, publication
and coverage across Europe is however patchy. Another data source is IMS
Health, a commercial organization monitoring prescriptions in order to deliver
marketing information for the pharmaceutical industry. The IMS-data document
standard dosage units (SU) that are not directly convertible into DDD. With
regard to the spectrum of the use of antipsychotics (not limited to schizophrenia)
numbers should be regarded as indicative, detailed interpretation would be
subject of many qualifications. Prescription data from Germany from the 12-months period between July 2002 and June 2003 substantiate that only
30% of the antipsychotics were prescribed to treat patients with schizophrenia
Health indicators usually used have limited relevance for
psychiatric conditions or at least do not reflect the complex aspects of the
disease burden. Hence the data presented are supplemented by data from the
Unless otherwise noted, the source of data is the European
Health for all Database (HFA-DB) of the WHO Regional Office for Europe. Other data and information are referenced accordingly.
126.96.36.199.3. Data description and analysis
Data usually representing the burden of disease are death rates due to
the diagnosis of interest, hospital admission rates as indicators for
prevalence - as well as information on the length of hospital stays and on
disability adjusted life-years (DALYs). In addition, we report information on
co-morbidity and the stigma associated with schizophrenia, on treatment gaps
and costs to cover at least the main aspects of the schizophrenia burden.
Prevalence and Incidence
Figure 188.8.131.52.1. Estimated prevalence of psychotic
disorders in EUGLOREH Countries.
The likelihood that individuals experience an onset of schizophrenia
during their lifetime is about seven per 1 000 people. The latest available
most comprehensive review on prevalence data identified a median point
prevalence of 4.6 per 1 000, 3.3 for period prevalence, 4.0 for lifetime
prevalence and 7.2 for lifetime morbidity risk (Saha et al, 2005). These
findings are reported equally in the 2001 WHO report and the 1996 Burden of
disease study – although not congruent with estimates usually reported in
textbooks - and e.g. in the fourth edition of the Diagnostic and Statistical
Manual of Mental Disorders (DSM-IV) where the value noted for lifetime prevalence
is 0.5 to 1.0%.
Worldwide, between 16 and 42 per 100 000 population experience a new
onset of schizophrenia per year; thus the incidence rate is 0.016 to 0.042%
with a broad variation across studies and countries
(WHO, 1997). Recent international literature emphasises the need for research
on long-term neglected country or cultural specific differences in prevalence
and in certain incidence figures (gender, migrants, urbanicity). Hence,
detailed data are not yet available. Factors that may influence the prevalence,
such as recovery, suicide or other forms of early mortality, also need to be
re-evaluated. In this context, the definition of recovery versus persistence of
the disease and how these factors can be operationalised, also need to be
Incidence data are usually estimates based on first
treatment/admission data due to the diagnosis of interest. These estimates have
to be interpreted with care taking into account the treatment gap, the evidence
for coding bias and the lack of psychiatric case registries in most of the
European countries.. Efforts to optimize delivery of data and establish a more
reliable database are very important in order to create a firm basis for
decisions and strategies regarding mental health policy.
The crude F20-death rates per 100 000 inhabitants would allow a
comparison between European countries. Available data from the European
Detailed Mortality Database show very high rates in Hungary and especially in Finland, while for Finnish women schizophrenia seems to be more often a fatal diagnosis. In
order to further evaluate regional differences, we looked for the absolute
number of deaths in selected countries with respect to age categories. These
data show a peak in the 30 – 34 age group and again between 45 and 49 years of
age with a continuous increase from 54 years on in Hungary, while in France the first peak is at 40 to 44 with a plateau at 50 to 59. As already mentioned
above, mortality data seem to be quite questionable but these examples might
illustrate the problem of missing reliable data although there is evidence for
a substantially increased death rate of people suffering from schizophrenia.
There is a substantial difference between reported death rates in
statistics and expected mortality rates according to literature.
The projected mortality rates for schizophrenia according to the
updated estimates of the Global burden of disease study (Mathers and Loncar,
2006) describe a positive trend in the years to come. This is in contrast with
the increasing schizophrenia-attributed mortality rates stated in literature
People with schizophrenia are at an
increased mortality risk compared to the general community and have a lower
life expectancy. Despite improvements in drug therapy and in mental health
services, this mortality gap has even worsened during recent decades as
demonstrated in a recently published systematic review. Based on
population-based studies reporting primary data on deaths, the standardized
mortality ratio (SMR) for people with schizophrenia was elevated by a factor of
2.5 (median value). Suicide was associated with the highest SMR of 12.86. The
authors found that the SMRs for all-cause mortality had significantly increased
over time (Saha et al, 2007). A recent epidemiological study in Sweden evaluated that the higher
mortality rate (23.0% vs. 11.2%) was mainly the result of injuries from
accidents and poisonings and cardiovascular disease. Mortality due to
cardiovascular disease was more pronounced in middle age (Fors et al, 2007).
Thus, mortality increasing factors such as lifestyle issues – reduced physical
activity, increased rate of smoking, etc. –, the high rate of
cardiovascular and metabolic co-morbidities and the high percentage of
co-morbid addictive disorders should all be addressed in future programmes to
reduce the mortality of people with schizophrenia.
In addition, the metabolic side-effects of some of the second
generation antipsychotics have to be re-examined in order to identify their contribution
to the mortality rate (Saha, 2007).
The mortality data attributed to the group of schizophrenias as
reported in the WHO statistics need further clarification. The cause of death
assignment does not allow differentiation according to natural and unnatural
deaths. Death rates caused by schizophrenia vary widely between countries and
this cannot only be due to differences in psychiatric care, actually it is more
likely that they express differences in the cause of deaths assignment.
Lifetime suicide rates for schizophrenia of 10% are widely cited. More
recently, published estimates of lifetime suicide prevalence in schizophrenia
are contradictory: While Palmer et al quote “that 4.9% of schizophrenics will
commit suicide during their lifetime, usually near illness onset” (Palmer et
al, 2005), a comparison of suicide rates from the pre-community care era and in
the years 1994 – 1998 (based on cohorts of the North West Wales historical
database) performed by Healy and co-workers found a significant increase in the
more recent years possibly mediated by deinstitutionalization and other factors
(Healy et al, 2006).
Currently available statistical suicide data - if not based on
psychiatric registries -do not provide information on underlying illnesses. Thus,
there are no reliable data on suicides in the context of schizophrenia.
All these factors underline the need of evaluating detailed mortality
data with a more distinct cause of deaths assignment.
In addition, there is a need to identify drugs that may have
favourable effects on suicidality.
Admission rates according to EDMD show some extremely different values
for certain countries, which cannot be due to higher incidence or prevalence
rates in these countries. Some countries are missing in figure 184.108.40.206.2 due to
lacking ICD-10 documentation. Even if discharge dates were taken into account,
there would be no considerable differences. This points to the necessity of a
more consistent data collection and documentation.
Figure 220.127.116.11.2. Inter-country comparison
of hospital age standardized in-patient admission rates per 1000; Main diagnosis:
Schizophrenia ICD-10 codes: F20.
Figure 18.104.22.168.3. Admission rates trend
The trend over
time of admission rates reflects the tendency of deinstitutionalization,
although in some countries the rate still remains high.
Figure 22.214.171.124.4. Average length of stay
- trend over time
Available data on inter-country
comparisons of hospital in-patient admission rates, average length of stay and
number of day-cases vary widely. In addition, data coded according to
ICD-10/F20 are only available for a very limited number of EU-countries.
Considering in-patients per 1,000 populations (see Figure 126.96.36.199.2), the value
reported from Finland of about 20.506 is more than 100 fold higher than the
value reported for Norway (0.0164). On the other hand, data from the Nordic
Medical Statistical Committee (NOMESCO, 2007) indicate that there is no
substantial difference in discharge rates from psychiatric hospitals between Finland and Norway. Although in some cases variations like this might in part be due to differences
in the mental health care systems, the extent of variation is due to
differences in the national health information systems and deficiencies in
international health information systems.
Not even accurate hospital morbidity data alone provide a
comprehensive picture of the complex aspects of schizophrenia and their impact
on the individual and on society. It is indispensable to supplement morbidity
databases with data on outpatient care.
Disability adjusted life-years
In 2005, neuropsychiatric conditions were the second most frequent
cause of disability adjusted life years (DALYs) in the WHO European Region
according to the Global Burden of Disease estimates, amounting to one fifth of
DALYs due to health conditions (WHO, 2007). In terms of years lived with
disability (YLD), the portion is even higher – i.e. more than two fifths.
According to the most recent data, neuropsychiatric conditions now rank first
in most European countries. With regards to single neuropsychiatric conditions,
four of the top 15 contributors to DALYs in Europe are neuropsychiatric
disorders (depression in third place, alcohol use disorders sixth rank, self
inflicted injuries eleventh, and dementia fourteenth). In terms of YLDs,
schizophrenia is ranking 11th and accounts for 2.3% of the years lived with disability
(unipolar depressive disorder ranks 1st and accounts for 13.7% of YLDs,
followed by alcohol use disorder accounting for 6.2% YLDs).
Table 188.8.131.52.1. DALYs due to schizophrenia
DALY rates for schizophrenia are especially important since the first
onset occurs predominantly in young ages, the time when education is ongoing or
the person starts a professional career. This is reflected by the high
schizophrenia DALY rates estimated from data of 2002 for the year 2005: In the
WHO European Region the 15 – 29 age group has the highest values of
schizophrenia-associated DALYs – 616544 for males and 579006 for females
(Mathers et al, 2006).
Deficits in social abilities often lead to restrictions or even
incapability to participate in the work life. Therefore, schizophrenia carries
with it massive human and economic disability costs. Substantially reducing
these impairments in social functioning is one of the major challenges of new
therapeutic strategies and the development of innovative drugs.
The social situation – living and performance of social roles – is an
important outcome measure for people with schizophrenia. Longitudinal research
has shown that antipsychotics effectively prevent relapses. But this is not
necessarily linked to an improvement of the social situation. What really
matters is how people live, if they are able to establish social relationships,
to live with a partner etc. Therefore, social outcome should be given more
prominence in research and practice (Priebe, 2007). The importance of social
outcome is also reflected in the quality of life assessment which differs
significantly between physicians and patients.
There is also a need to develop strategies to prevent disability
including the development of new drugs, since prevention will hopefully be far
more successful than attempts to rehabilitate individuals after a long and
debilitating disease course.
People with schizophrenia are significantly more likely to have one or
more co-morbid physical or psychiatric conditions compared to controls.
Co-morbidity has been shown to be an indicator for a more severe disease course
and poorer outcome. Physical co-morbidity accounts for 60% of premature deaths
not related to suicide. According to a recent review of the literature on
physical illness and schizophrenia, people with schizophrenia have a higher
prevalence of HIV infections and hepatitis, osteoporosis, altered pain
sensitivity, sexual dysfunction, obstetric complications, cardiovascular diseases,
overweight, diabetes, dental problems, and polydipsia than the general
population (Leucht et al, 2007).
statistics do not cover this important aspect of morbidity.
Table 184.108.40.206.2. Prevalence and adjusted odds
ratios for main medical conditions in women and men with schizophrenia compared
Schizophrenia is associated to co-morbid physical and psychiatric
illnesses. With respect to psychiatric diseases, depression and addiction have
the most important impact on prognosis. About 50% of the patients with
schizophrenia are addicted to alcohol, nicotine or cannabis (Regier et al,
1990). Compared to typical community prevalence rates (25-30%), the rate of
nicotine addicts is three times higher (88%; Punnoose and Belgamwar 2006).
The treatment of people with co-morbid addictive disease is a great
challenge for therapists, since these patients experience frequent relapses,
show poor treatment compliance and are difficult to be treated in a setting tailored
to treat people suffering from psychosis. On the other hand, conventional
therapeutic settings for detoxification are not adequate for people with
schizophrenia. In addition, substance abuse is associated with consecutive
somatic diseases of the cardiovascular system (due to the use of nicotine) or
the liver (due to alcohol consumption). The underlying causes for this
coincidence have not been fully elucidated.
With regards to physical co-morbidities, the greatest amount of
available data is on diabetes and the metabolic syndrome. The diabetes
prevalence is shown to be about 15% in patients with schizophrenia as compared
to 2 – 3% in the general population. In the family history of people with
schizophrenia there is evidence of an increased frequency of diabetes which may
suggest a common pathomechanism (Prince et al, 2007). In addition, people
affected by schizophrenia show a much stronger tendency to be obese, i.e. a 1.5
to 4 times increased rate compared to community rates (Coodin, 2001; Silverstone,
1988). Adiposity again represents an important risk factor to develop the
metabolic syndrome. Although some second generation antipsychotics are
associated with metabolic side effects (Engl et al, 2006) the increased rate in
people affected by schizophrenia cannot be exclusively attributed to these
substances since abnormalities of glucose regulation were noticed in people
with schizophrenia before the use of antipsychotic medication (Holt et al,
A great deal of co-morbid diseases remains undiagnosed and often
inadequately treated. When taking into account the great impact of co-morbidity
on outcome, one must be aware that the disease burden due to schizophrenia is
Evidence based treatment of schizophrenia and treatment
The state of the art of the treatment of schizophrenia comprises
psycho-pharmacotherapy, psychotherapy and psycho-social therapy. While nearly
all people with schizophrenia need antipsychotics not only during the acute
episode but also for long-term relapse prevention, many will benefit from
psychotherapy, while the majority needs to be supported through psycho-social
A recently published meta-analysis on the efficacy of psychotherapy
for patients with schizophrenia (Pitschel-Walz and Bäuml, 2007) demonstrated
beneficial effects for psycho-education, family intervention and cognitive
behavioural therapy. For other treatment approaches, the authors found positive
trends in efficacy, but due to a paucity of well-controlled randomized studies,
a final conclusion could not be drawn.
Psychotic episodes have a devastating impact with respect to
morbidity, cost, suffering, and function. Besides optimizing the treatment of
patients with schizophrenia, an important issue is represented by early
identification and intervention with the goal of preventing morbidity and
disability. There is often a long time lag after the onset of symptoms and
before schizophrenia is diagnosed and appropriate treatment installed (Häfner
et al, 2004). During that time, dire psychosocial consequences of the disease
may develop. Besides, delayed treatment is more likely to be associated to
compulsory admission to psychiatric hospitals. Therefore, there is an urgent
need to identify people at increased risk and to establish optimal intervention
Prodromal state and prevention
People even in an initial prodromal state are already suffering from
mental changes, including sub-psychotic symptoms, developing cognitive
deficits, decreasing subjective quality of life, substantial loss of occupational
and social functioning. Their risk for development of full-blown psychosis is
markedly increased (Häfner and Maurer, 2006).
Effective intervention strategies are needed for both, treatment of prodromal
of psychosis. Based on the limited available data there seems to be evidence that
intervention during this phase of the disease is apt to reduce the incidence of
first onset of psychosis and can lead to the improvement of symptoms as well as
social adjustment. Yet the limited data - although promising - do not allow
final conclusions on the preventive effects of such interventions. More
conservative opinions concerning early detection and intervention question the
validity of prediction criteria and the benefit of early intervention,
especially with regards to the underestimated possibility of spontaneous
remission of symptoms (Bottlender, 2006).
Although a number of prodromal treatment programmes have been
initiated around the world, three early programmes have generated most of the
intervention findings to date: Personal Assessment and Crisis Evaluation (PACE)
in Australia, and the Prevention through Risk Identification, Management, and
Education (PRIME) and Recognition and Prevention (RAP) programmes in the USA. In some European Countries parallel to the establishment of Early Recognition Centres
and respective programmes, the European Prediction of Psychosis Study (EPOS)
was also initiated. This is the first European prospective trans-national field
study of the prodrome and moderating risk/resilience factors of psychosis. As
different health systems provide different structures of care, prevention
programmes will only be successfully implemented and sustained system-wide if
they can be adapted to the system’s special opportunities and needs. EPOS will
provide a sound database for a future evidence-based prevention of psychosis. (Klosterkötter
et al, 2005; Klosterkötter, 2007).
The gap between need and utilization
According to the 2001 WHO Report, between 36% and 45% of the 6.6
million people in the WHO European Region (7 per 1000) affected by
schizophrenia are estimated to be untreated. This may be due to several
reasons: lack or misallocation of resources, non-adherence to or inadequate
application of guidelines, as well as neglection of certain therapeutic
options, non-compliance, etc..
According to a literature review on the treatment gap in mental health
care, European data on this topic is limited. Community-based epidemiological
surveys on service utilization of adults at age 15 and older covering
schizophrenia are available only from Finland, the Netherlands and the UK. The prevalence period for help seeking in these surveys was 12 months (Kohn et al,
The percentage difference between the number of people needing
treatment for schizophrenia and the number of people receiving treatment
calculated on service utilization rates in these surveys, population size, and
prevalence rates was as follows:
Mini survey Finland 14.3%
NEMESIS Netherlands 53.3%
ONS United Kingdom 15.0%
OPCS United Kingdom 18.0%
According to the examination of the extent of the treatment gap in
mental health care (people remaining untreated although effective treatments
exist), the median treatment gap for schizophrenia (including other non
affective-psychoses) was 32.2% (Kohn et al, 2004) worldwide; selected data of
studies from Western Europe note 17.8%, while estimates in the WHO Report for
Europe 2001 were much higher, namely 36% to 45%. This implies that far too many
people with schizophrenia do not receive timely and adequate treatment. This
may lead to an increased burden of the disease due to more severe courses of
schizophrenia resulting in increased disability rates.
The efficacy-effectiveness gap
Advances in the understanding of schizophrenia and in its treatment
have led to the availability of a more complex armamentarium of interventions
to be applied on an individual basis. Yet the expansion of knowledge is not
adequately translated into practice, thus leading to an “efficacy-effectiveness
gap” which is supposed to be the comprehensive description of the gap between
what researchers know and what is done in routine care, what psychiatrists do
and how well it works (Spollen, 2003).
Domains reflecting this gap are the prescribing practice, the
provision of psycho-social treatments in routine care, the standard of
guidelines, the degree of adherence to these recommendations and patient’s
For a multitude of reasons, the
routine clinical care of schizophrenia is far behind the current evidence.
Closing this gap is essential if people with schizophrenia are to benefit from
advances achieved in treatment and basic research. Reasons for this gap might
be lack of knowledge, the fact that translation from research into practice is
difficult because of differences between the specific circumstances in
structured research settings and routine care (patient population, artificial
circumstances, resources available, staff knowledge, interventions to enhance
compliance, etc.), non-compliance, difficulties in implementing guidelines
where available, and lack of resources. Thus , various strategies are required
to close the gap.
Unmet needs in
psycho-pharmacotherapy and psychosocial interventions
Although there is plenty of evidence that the treatment of
schizophrenia should be based on three therapeutic columns – antipsychotic
medication, psychotherapy and sociotherapy (Pitschel-Walz, 2007; Vauth, 2006,;
Glynn, 2003; Pilling et al, 2002) – with a varying focus during the course of
the disease – practice does not necessarily reflect this approved strategy
(Demyttenaere, 2004; Middelboe, 2001).
While pharmacological treatments are extensively studied, there is
much to be learned in the everyday use of these treatments, because the study
population is usually not representative of routine clinical samples (strict
exclusion criteria and study duration limited to some weeks). Thus, clinical
trials provide tendencies of efficacy in certain patient groups but give little
to no information about individual variability and its effect on treatment.
Therefore, there is a need for intervention trials that reflect every day
practice, such as CATIE, CUtLASS or EUFEST.
Prescription antipsychotics vary widely in European countries. Finland has by far the highest level of antipsychotic prescriptions per head of population; Germany displaying the next highest use of this drug class (Knapp et al, 2007). According
to NOMESCO figures, the DDD sales of antipsychotics in Finland is 50% higher than in Sweden, whereas no IMS-data from Sweden were available. Regarding the
prescription of atypical antipsychotics Finland is in the lead, too, while in
the UK mostly typical antipsychotics are prescribed, and little to no
atypicals. Prevalence estimates on schizophrenia for Finland are contradictory;
some findings suggest higher rates compared to many other countries (e.g.
Hovatta et al, 1997); more recent evidence suggests a decline in prevalence
(e.g. Suvisaari et al, 1999), but even higher estimates cannot account for the
extremely unusual high usage of antipsychotics and are probably related to use
of antipsychotics for other indications than schizophrenia. Thus, the reasons
for this difference should be further evaluated. The United Kingdom has a very
low usage of antipsychotics compared to other EU countries.
With regards to the second generation of antipsychotics – “atypical
neuroleptics” – the prescribing practice also shows significant differences
across European countries. According to IMS-health-data (Intercontinental
Marketing Services) based on the 1st quarter of 2004, second generation
antipsychotics account for 50% in Great Britain, 43% in Spain, 41% in Finland,
37% in Italy, 35% in Denmark, 34% in Hungary, 26% in Germany, 23% in France,
16% in Czech Republic, and 15% in Poland (Fricke and Pirck,
2004). Differences in usage of second generation antipsychotic drugs
recommended by international guidelines may in part be due to health insurance
policies but are probably indicators for the gap between guideline evidence and
practice. However, in the EU 15 countries there is a consistently increasing
trend over time (years 1993 – 2002) in prescribing atypicals (Knapp et al,
2007) (Figure 220.127.116.11.5).
Figure 18.104.22.168.5: Prescription of antipsychotics
in the year 2002.
The gap between evidence and implementation as well as utilization is
especially big for psychosocial treatments. Although there are indications that
a number of patients with schizophrenia receive some kind of individual
counselling, it is doubtful that many of these therapists are using
research-proven models. It is thus indispensable to evaluate barriers of
implementation for this kind of interventions and to develop strategies to
implement them successfully.
Obviously, there is a widespread practice of focusing on drug therapy
and neglecting psychosocial interventions (Lehman and Steinwachs, 2003). The
latter is in part reflected in the missing of respective recommendations in
guidelines (Table 22.214.171.124.3).
Table 126.96.36.199.3. Psychosocial
interventions reflected in European guidelines
Another key factor responsible for a treatment gap is the
non-compliance of people with schizophrenia and their frequent non-adherence to
medication. Median non-compliance rates are 50%, thus being similar to other
mental illnesses and somatic diseases. The rates vary widely depending on the
therapeutic setting, the kind of application of the medication, the assessment
methods and the duration of the evaluation; 24 - 88% (Lacro et al, 2002).
According to the most recent data evaluated within the EUFEST trial, treatment
discontinuation over 12 months in patients with first-episode schizophrenia was
significantly greater in patients given a low dose of haloperidol than in those
assigned to treatment with second-generation antipsychotic drugs (Kahn et al,
2008). Non-compliance does not necessarily mean “not taking the prescribed medication”,
it can also mean “Changing the dosage or the medication regimen”; about 30%
behave like this. The lack of illness acceptance and insight into the necessity
of treatment leads to discontinuation of medication intake with often serious
consequences (Byerly et al, 2007). A substantial proportion of relapse is
supposed to be due to non-adherence.
Deficits of guidelines and their
Although there are quite a few excellent guidelines on schizophrenia
treatment, most of them do not meet current quality standards as assessed by
the AGREE (Appraisal Guideline Research and Evaluation Europe) instrument, a
rating scale to assess the quality of reporting and of the guideline
development process (Leucht et al, 2006; Gaebel et al, 2005; AGREE Collaboration,
2003) – see table 188.8.131.52.4.
Table 184.108.40.206.4. European practice guidelines
and their AGREE score
Guidelines are intended to be a synopsis of evidence based knowledge
about schizophrenia treatment and to provide an algorithm to help clinicians
proceed through the various options in an organized and rational way in order
to identify the optimal strategy for the individual patient.
Lack and misallocation of resources
The WHO-Atlas on Mental Health delivers an overview on resources of
care available in the EU member states and respective deficits.
Table 220.127.116.11.5. Mental health service
Not only the lack of resources but also their misallocation may lead
to a treatment gap as demonstrated in the WHO-initiated World Mental Health
Surveys (WHO, 2004), which were linked to the European Study on Epidemiology of
Mental Disorders (ESEMeD) (Demyttenaere et al, 2004). The authors concluded
that the findings on unmet needs for treatment among serious cases were not
merely a result of limited resources but also of the misallocation of these
resources. Although schizophrenia was not explicitly in the focus of this
evaluation, the findings might to a certain degree be also valid for
Adequate numbers of
specialized personnel for mental health services are an important resource of a
good mental health system. On average, the situation in the WHO European Region
is much better than in other regions of the world, but the significant
variations between countries arouses concern: the numbers of psychiatrists
ranges from 1.8 to 25, of psychiatric nurses from 3 to 104, of psychologists
from 0.1 to 96 per 100 000 population (WHO, 2005c). This is also true with
regards to community-based care.
The 2001 World Health Report on Mental Health strongly
favours the benefits of community-based care delivered close to home and
recommends the proper use of a range of services. Several European countries
have been leaders in the movement towards effective community-based care. This
may be reflected in the fact that Europe has a lower proportion of psychiatric
beds in general hospitals (10%) than the world average (16%). However, it may
also indicate that many European countries continue to rely on large mental
hospitals to provide care for people with the most severe psychiatric
The extent and quality of mental health care in European countries is
characterized by a great degree of variability as highlighted by the current
data from the WHO Atlas on mental health resources in the world (WHO, 2001b):
“One third of the European countries do not have specified mental
health policies. More than two fifths of them do not have mental health
programmes. One fifth does not have a therapeutic drug policy or an essential
drug list. One fifth of countries has not made the three essential psychotropic
drugs – an antidepressant, an antipsychotic and an antiepileptic – available in
primary care. About a tenth does not have mental health legislation”.
These deficits may in part be the consequence of the limited
allocation of the national health budgets to mental disorders: Although mental
disorders represent 20% of the disease burden, only 5.7% of the budget is
allocated to mental health care. Research is necessary to find out if health
expenditures reflect quality of care. However, insufficient treatment is not
merely a result of limited resources but also of the misallocation of these
resources as demonstrated by the findings of the European Study on Epidemiology
of Mental Disorders (ESEMeD) providing information on countries such as
Belgium, France, Germany, Italy, The Netherlands, Spain and Ukraine (WHO,
2004). While the need for treatment in cases of severe disorders was not met,
many people with subthreshold disorders were treated. A Nordic study on people
with schizophrenia living in the community found that, in general, patients
reported a need for help from services clearly exceeding the actual amount of
help received. The highest proportion for unmet needs was related to social and
interpersonal functioning (Middelboe et al, 2001)
Stigma and discrimination
People affected with schizophrenia do not only suffer from psychotic,
cognitive or affective symptoms but to a large extent from stigmatization and
discrimination. Presumably, the reluctant help seeking behaviour when first
symptoms emerge and the delayed treatment even after onset of the first acute
psychotic episode are due to the stigma associated to the diagnosis of
schizophrenia. An international example for this problem is the Japanese
experience with renaming schizophrenia (Sato, 2006). A pilot study recently
published in Italy (Buizza et al, 2007) evaluated four dimensions of stigma in
428 concrete cases of stigmatization reported by six focus groups (three with
people with schizophrenia and three with patients’ relatives) (Figure
18.104.22.168.6). Internalized stigma is related to low self-esteem, hopelessness,
and reduced social contacts (Lysaker et al, 2007) – factors associated with a
chronic course of disease.
Figure 22.214.171.124.6. Experiences of stigma
The stigma attached to mental illness is the main obstacle to the
provision of care (Sartorius, 2007). Stigma marks those who are ill, their
families across generations, institutions that provide treatment, psychotropic
drugs and mental health workers. Furthermore, stigma leads to discrimination in
the provision of services for physical illness in those who are mentally ill
(Fang and Rizzo, 2007).
Schizophrenia especially is associated with a heavy burden of
stigmatization because of psychotic symptoms. The main prejudices are that
people with schizophrenia are dangerous and that their behaviour is
Research in stigma has also evaluated self-stigmatization in people
afflicted by mental disorders: More than 60% abandon from having close personal
relationships and from applying for employment, more than 70% resign from doing
or looking for something else that is important to them, and nearly 80% believe
they should better not talk about their diagnosis (Baumann et al, 2007).
As stated in the EU Green Paper for Mental Health, fighting stigma is
one of the main challenges and most urgent tasks in the process of optimizing
the situation of mentally ill people and improving mental health care. An
evaluation of the effects of the interventions according to the German WPA
Program against stigma and discrimination because of schizophrenia provided
limited evidence for the efficacy. The authors concluded that further research
is needed to separate direct effects from more general influences on social
distance (Gaebel et al, 2005).
Direct and indirect costs of schizophrenia
A number of studies have attempted to estimate the aggregated burden of
mental illness as a whole, and schizophrenia as a single diagnosis. Economic
costs vary by country; this is particularly true for schizophrenia. The direct
costs account only for a small part of the expenditures; most of the economic
burden is due to DALYs and the respective expenditures for social welfare,
disability pensions etc. A comprehensive European database of national
statistics on all expenditures caused by schizophrenia is not available. Yet
the European Brain Council has evaluated the costs of brain disorders in Europe
by an analysis of studies from Italy, Denmark, the Netherlands, Spain, and the United Kingdom. Included in this analysis are psychotic disorders represented mainly
by schizophrenia. However, the authors stressed the fact that the costs
provided by the countries do not in all cases cover direct and indirect
expenditures for all diagnosis (Andlin-Sobocki & Rössler, 2005).
In 2004, the costs for hospital stays due to mental disorders were
about 2.5 times as high as for outpatient care (see Table 126.96.36.199.6). Since
psychotic disorders account for the highest amount of direct costs, as
evaluated by Andlin-Sobocki (Figure 188.8.131.52.7), it can be assumed that a great
part of the costs for hospital stays is related to schizophrenia, being a very
severe disease which affords long hospital stays and frequent readmissions.
This assumption is supported by the most recent data from Sweden: Lindström and co-workers explored the direct and indirect costs in a cohort of
patients with schizophrenia over 5 years. They found that the direct costs were
dominated by hospitalization; drug costs represented only 7% of the direct
costs. Indirect costs represented 43% of total costs within these 5 years
(Lindström et al, 2007)
Table 184.108.40.206.6. Expenditures by kind of
health care service for year 2002 and 2004 with respect to F20-F29
Figure 220.127.116.11.7. Direct healthcare costs
by brain disorder
The most comprehensive evaluation of costs for brain disorders was
performed by the European Brain Council (Figure 18.104.22.168.8). Although not all
countries in the scope of this evaluation provided detailed data, these
findings are a valuable source of information on the amount of mental health expenditure.
Families of people affected by mental disorders carry an enormous amount of
financial (and psychological) burden. Providers of care are aware of this fact,
but when talking about budgets necessary to treat schizophrenia according to
the therapeutic state of the art, this factor is not taken into account.
Figure 22.214.171.124.8. Costs per case of schizophrenia
in EUGLOREH countries.
Andrews and colleagues evaluated cost-effectiveness of current and
optimal treatment for schizophrenia (Andrews et al, 2003). Their findings – 22%
of burden could be averted by optimal treatment compared to 13% with current
intervention practice, the number of YLDs averted could be increased by
two-thirds – are convincing also with respect to the affordability of optimal
treatment within present budgets.
The costs as segmented according to different health care services,
reflect the practice of restrictive assignment to outpatient care and
The allocation of budgets needs to be revised with respect to the
increasing burden of mental illnesses,. Investments in the reduction of
disabilities should be increased. The strategy of financial allocation should
be reconsidered with respect to the minimal share of the budget dedicated to
126.96.36.199.4. Control tools
National mental health acts or programmes
Before and after the publication of the Green paper (European
Commission, 2005) and the WHO Helsinki Declaration (WHO, 2005d) some helpful
material was made available by the WHO and the EU Commission. The papers
reflected the efforts to build the basis for a EU strategy to improve mental
health in the European Region. Some of these publications are listed here
WHO Atlas Mental Health, published in 2001 – Collection of data on the mental
health care system. www.who.int/mental_health/media/en/244.pdf
Mental Health in Europe 2001 - Country reports from the WHO European
Network on Mental Health
Mental health: facing the challenges, building solutions. Report from the WHO
European Ministerial Conference 2005
health promotion and mental disorder prevention across
Member States: a collection of country stories (European Commission, 2006a)
Health in the EU – Key facts, figures and activities http://ec.europa.eu/health/ph_determinants/life_style/mental/docs/background_paper_en.pdf
There are different EU-programmes dealing with mental health. However,
there is still no European master-plan resulting from the consultation process
on the Green Paper. Instead of further pursuing the Green Paper Process, plans
were made to initiate a Europe-wide Mental Health Pact during a EU Health
Ministerial conference held in June 2008. This conference in fact resulted in a
consolidated version of the Mental Health Pact – www.ec-mental-health-process.net . The Implementation of
the pact focuses on four priority themes; a series of respective thematic
conferences is scheduled for 2009-2010. Combating stigma and social exclusion
is a priority which runs through across all thematic areas and is supposed to
be a main focus of research activities.
A most recent publication on the future direction of mental health care was edited in the UK. This might be an initial step towards a concerted EU strategy (Knapp et al, 2007).
Since strategies and decisions should be backed up by reliable data,
the improvement of existing databases (WHO/EUROSTAT) with harmonized
information according to ICD-10 is most needed. The establishment of a specific
database and investments in optimizing statistics are indispensable. With
regards to psychiatric illnesses, detailed case registries (which are only
available in some European countries such as Belgium, the Netherlands, and Denmark) and the implementation of disease management programmes would cover three
main objectives: complete and ameliorate the database, and improve care.
The development of a methodologically sound guideline is a very
complex process that requires time and money. Many countries do not have
sufficient funding for guideline development. Independent international
organisations could contribute to defining a core set of unbiased schizophrenia
treatment recommendations. In countries with a shortage of resources, this
could be a basis for adaptation to national and economic backgrounds (Gaebel et
al, 2005). Another solution, as suggested by Leucht commenting on the survey on
schizophrenia practice guidelines, “would be an international joint project
with the aim to develop shareable guidelines and thereby save costs” (Leucht, 2006).
Some countries already have national and international programmes
against stigma. Great Britain is very active in establishing national
programmes to fight stigma. In Germany, the German Society of Psychiatry,
Psychotherapy and Nervous Diseases recently initiated a National Alliance on
Mental Health supported by the Ministry of Health. This is meant to continue
and enhance the activities of the WPA Open the Doors programme, explicitly
designed to develop and create awareness programmes to fight the stigma of
mental disorders. Such programmes are, however, in general not focussed on the
stigma of schizophrenia.
To date there are few programmes focusing exclusively on
schizophrenia: Poland has established the WPA programme to fight stigma
associated with schizophrenia “Open the Doors” as did Germany; also Slovakia has a programme against stigmatization known with the name of Open Hearts.
Research in schizophrenia
Networking in research has proved to be a most effective instrument in
schizophrenia research e.g. in Germany. Establishing research alliances and
networks of excellence on a European level in order to enhance research and
gather comparable data on incidence and prevalence rates, risk factors etc is
most desirable (Wölwer et al, 2003)
The WHO Report “Prevention of Mental Disorders: Effective
Interventions and Policy Options” (2005) mentions 7 groups of disorders for
which effective prevention programmes can be designed. One of these disorders
is schizophrenia. But when talking about prevention of schizophrenia the only
option that will be available in some years’ time is the so called indicated
prevention that is targeted to people at high risk and emerging prodromal
symptoms (Klosterkötter, 2007). Respective programmes – e.g. Romania has initiated a focused prevention programme on
schizophrenia – are under development. Further research to ensure the
evidence base for such programmes is necessary. In Germany this issue is one of
the research projects of the German Research Network on Schizophrenia.
With regards to the enormous social burden it is indispensable
enhance trans-national research in the field of risk assessment, early
detection, first-onset schizophrenia, somatic and psychiatric co-morbidity
(especially substance misuse), emerging risk factors like migration;
increase research on mental health-care and on health-services in order to
optimize statistics and databases, as well as to minimize problems arising at
the interface between hospitals and community care;
accelerate knowledge transfer from research into practice;
enhance implementation of evidence based guidelines
promote early detection and early intervention in order to reduce chronic cases
and financial burden;
reduce the stigma associated with schizophrenia;
ameliorate the delivery of mental health care by providing area-wide community
based care and other resources necessary for the implementation of strategies
essential for optimal comprehensive treatment.
There are reasons for being optimistic, especially with regards to
achievements and future progress in treatment and in basic research, and given
the growing awareness of the relevance of mental illness. There is still plenty
to do to reduce the burden caused by schizophrenia for affected people, their
families, and society. Therefore it is necessary to:
to invest into basic and clinical research on schizophrenia at European level
covering aetiology and pathogenesis, development and evaluation of
psycho-social treatment strategies, and further improvement of drug therapy;
the delivery of state-of-the-art treatment in all medical settings;
psychiatrists in prevention, recognition and management of co-morbidities, and
overcome barriers towards optimal treatment;
the adequate supply of all necessary mental health services and providers;
re-entry into the working environment and social life in general, as major
factors of quality of life.
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Autism Spectrum Disorders (ASD) is a lifelong
neuro-developmental disorder due to neurobiological conditions. One of the
main difficulties in estimating the prevalence of ASD in a historical
perspective, is the fact that our understanding of autism has changed over
the past decade. One of the changes has been the appreciation that several
closely-related disorders exist; they share the same essential features but
differ on specific symptoms, age of onset, or natural history. These disorders
mentioned above are now conceptualised as ASDs.
In 1943 Leo Kanner described Infantile Autism as a
clinical condition characterised by “a profound lack of affective contact” and
“repetitive, ritualistic behaviour, which must be of an elaborate kind”.
Frequent changes since Kanner’s first clinical description with the intention
to develop a consistent case definition have created a wider and complex group
of diseases/conditions known as Autism Spectrum Disorders (ASDs).
ASDs include the classical Autism described by
Kanner and other clinical conditions like Asperger’s syndrome, Fragile X Syndrome,
Landau-Kleffner Syndrome, Rett syndrome, childhood disintegrative disorder, and
PDD-NOS (pervasive developmental disorder not otherwise specified). In the last
five years, research has shown that many people with autistic behaviours have
related but distinct disorders:
Asperger’s Syndrome is characterized by concrete and literal
thinking, obsession with certain topics, excellent memories and being
‘eccentric’. These individuals are considered as highly functioning, are
capable of holding a job and of having an independent life.
Fragile X Syndrome is a form of mental retardation in
which the long arm on the X chromosome is constricted. Approximately 15% of
people with Fragile X Syndrome exhibit autistic behaviours. These behaviours
include: delay in speech/language, hyperactivity, poor eye contact, and
hand-flapping. The majority of these individuals function at a mild to moderate
level. As they grow older, their unique physical facial features may become
more prominent (e.g., elongated face and ears), and may also develop heart
People with Landau-Kleffner Syndrome also exhibit many
autistic behaviours, such as social withdrawal, insistence on sameness and
language problems. These individuals are often thought of as having
‘regressive’ autism because they appear to be normal until sometime between
ages 3 and 7. They often have good language skills in early childhood but
gradually lose their ability to talk. They also have abnormal brain wave
patterns which can be diagnosed by analyzing their EEG pattern during an
extended sleep period.
Rett Syndrome is a degenerative disorder which affects
mostly females and usually develops between six and eighteen months of age.
Some of their characteristic behaviours include: loss of speech, repetitive
hand-wringing, body rocking, and social withdrawal. Individuals suffering from
this disorder may be severely to profoundly mentally retarded.
Williams Syndrome is characterized by several autistic
behaviours including: developmental and language delays, sound sensitivity,
attention deficits, and social problems. Opposite to many autistic individuals,
those with Williams Syndrome are quite sociable and may have heart problems.
Childhood disintegrative disorder (CDD) is a
condition occurring in 3 to 4 year olds characterized by deterioration, over
several months of intellectual, social and language functioning. Also known as
disintegrative psychosis or Heller’s syndrome. This rather rare condition was
described many years before autism but has only recently been ‘officially’
recognized. Children with CDD develop a condition which resembles autism but
only after a relatively prolonged period of clearly normal development.
Although apparently rare the condition has probably been often diagnosed
incorrectly. CDD is usually associated to severe mental retardation. There also
appears be an increased frequency of EEG abnormalities and seizure disorder.
Pervasive Developmental Disorder, Not Otherwise Specified
(PDD-NOS) is a ‘sub threshold’ condition in which some - but not all -
features of autism are explicitly identified. PDD-NOS is often incorrectly
referred to simply as ‘PDD’. The term PDD refers to the class of conditions to
which autism belongs. PDD is not itself a diagnosis, while PDD-NOS is a
diagnosis. The term PDD-NOS; also referred to as ‘atypical personality
development’, ‘atypical PDD’ or ‘atypical autism’, is included in DSM-IV to
encompass cases where there is marked impairment of social interaction,
communication, and/or stereotyped behaviour patterns or interest, but when full
features for autism or other explicitly defined PDD are not met.
188.8.131.52.2. Data sources
Autism Spectrum Disorders seem to be on the increase as
evidenced by several authors. However, there is no Europe-wide information on
the prevalence. Difficulties such as lack of consistency in diagnosis, lack of
agreement on case definition and differences in case finding methods have
contributed to this. Equally, in Europe, the social and economic burden of ASD
has not been adequately recorded, as epidemiological figures are unreliable and
There are no available comparable data on morbidity in ASD
in Europe. Controversy exists in the management of the disorder and cannot be
entered into within the context of this report.
An epidemiological survey conducted by Fombonne mentions
epilepsy as the most frequent co-morbid condition followed by hearing or visual
impairments, cerebral palsy, Downs Syndrome, tuberous sclerosis and Fragile X
Syndrome, among others (Fombonne, 2005).
It is not possible to comment on the current health
service usage per Member State in ASD as the case identification system is very
weak and variable from country to country. It has been observed that there are
very wide inequalities in terms of waiting lists for diagnosis, in countries
where such services exist, often in the private sector and through Parents’
Groups. This situation is profoundly felt in other countries where very few or
no diagnostic services for ASD exist.
Although a higher mortality risk has been observed in
autism compared with the general population, as far as we are aware no deaths
have been directly attributed to any of the conditions included in the ICD-10
code. Elevated death rates are due to several causes, including seizures,
accidents and respiratory diseases among people with severe learning disability
(Sanchéz-Valle et al, 2007).
184.108.40.206.3. Data description
Cross-sectional studies suggest that the evidence
supporting an increasing rate of autism in the UK and the US has gathered strength. Although both the nomenclature and the criteria used to define
autism have changed over the years, these changes are not so great as to
prevent comparative analysis and do not explain major differences in reported
prevalence over time. The major source of variability in reported autism rates
comes from incomplete ascertainment in young age cohorts, which limits the
ability to detect an underlying and rising secular trend. Reviews that have
downplayed the rising trend have overemphasized unimportant methodological
problems and failed to take into account the most relevant biases in survey
methodologies. Point prevalence comparisons made within and across surveys
conducted in specific geographic areas, using year of birth as a reference for
trend assessment, provide the best basis for inferring disease frequency trends
from multiple surveys.
Prevalence rates have been estimated in different European
countries but due to the different methodologies and definitions used, it is
not possible to make comparisons. A study published in 2004 (Blaxill, 2004)
looks at the different surveys carried out worldwide; the outcome suggests a
precautionary approach and that the raise in incidence of autism should be a matter
of urgent public concern.
In the United States of America, the Centres for Disease
Control and Prevention (CDC) carried out a prevalence study in 2002. This study
included approximately 10 percent of U.S. eight-year-old children born in 1994
from 14 states. A total of 407,578 children were involved and 2,685
eight-year-olds (65.88 per 10,000) were identified as having an ASD. The data
were reported by the Autism and Development Disabilities Monitoring (ADDM)
Network. The previous study, developed in 2000, found ASD rates ranged from one
in 222 children to one in 101 eight-year old children in the six communities
studied. The 2002 study found ASD rates ranging from one in 303 to one in 94
among eight-year old children. The average finding of 6.6 and 6.7 per 1,000
eight-year-olds translates to approximately one in 150 children in these
communities. This is consistent with the upper end of prevalence estimates from
previously published studies, with some communities having an estimate higher
than those previously reported in U.S. studies.
There is still controversy about the plausible
interaction between genetic and environmental risk factors for ASD. The study
of risk factors has contributed to the prevention of other health problems e.g.
cardio-vascular diseases, diabetes and cancer.
In ASD, several conditions have been found to be potential
risk factors. Most risk factors have been identified in clinical studies by
using different methods and populations. The inconsistent retrieval of data in
these studies has made direct comparison of risk factors very difficult.
Considering the ongoing collection of ASD data, several of the EU countries
have underlined the need for manuals in order to ensure the largest impact of
data quality. By following specific manuals, it will be possible to compare
data between the EU countrie, and thereby increase the chance of identifying
unique and strong risk factors for ASD.
A systematic review of prevalence studies has contributed
to explaining some of the influences on variation among prevalence estimates.
Over half of the variation among study estimates can be explained by the age of
the children screened, the diagnostic criteria used and the studied country.
Other important factors were whether the study was in a rural or urban location
and whether cases were assessed prospectively or retrospectively. The impact of
these known factors on prevalence estimates should now be further investigated
as they may be acting as proxies for other influences on prevalence.
It is well accepted in the scientific community that early
and intensive education can help children with ASD to develop and learn new
skills. Prognosis is greatly improved if a child is placed into an intensive
and highly structured educational program by the age of two or three. Earlier
identification of children with ASD could increase the effectiveness of their
220.127.116.11.4. Control tools and policies
On May 9th, 1996, the European Parliament launched an official Declaration in
which it urged the Commission to fully support any effort and project to
develop the rights of people with autism. Finally, at the beginning of 2006 the
EAIS project approved by the Commission the previous year began its work.
The central aim of the EAIS project is to have an agreed
information system to record ASD data. This data, recorded in a common format
across the EU, will provide the strongest, most robust evidence, available to
determine both the prevalence and financial burden of the disease and monitor
ongoing trends in these areas.
The project sets out the work being developed towards a
final protocol that will enable us to obtain valid information about ASD
prevalence in several European countries as well as harmonized methods for
planning an ASD prevalence study in Europe. This is a relevant action as
currently there is no such existing Europe-wide information and this sort of
study requires thorough planning for implementation.
Another aspect of the EAIS project is the study of the
Financial Burden of ASD. The economic consequences of Autism in the UK were calculated in a recent report made by one of the project partners, (Knapp et al,
2007). The findings reveal that children with
autism cost £2.7 billion (Euros 3.8 billion) annually, yet for adults the
figure is £25 billion (Euros 36.2 billion) – i.e. over eight times as
much. For adults with autism the highest costs are those generated by health
and social care provision (59%), followed by lost employment (36%) and family
expenses (5%). These findings give an up-to-date indication of the overall
economic cost of autism in the UK.
Since 2005, ASD has been included in both the ‘Rare
Diseases’ and ‘Major and Chronic Diseases’ Task Forces of the
European Commission, and although some conditions or syndromes within the
spectrum can be categorised as rare diseases, there is an
argument for no longer categorising ASD in this way. Indeed, the public health
burden of these disorders is now a considerable one.
The European Network of Surveillance on Risk Factors for
Autism and Cerebral Palsy (ENSACP) a co-financed project by the Public Health
Executive Agency (PHEA) proposes to construct a preliminary guide that can be
used to standardize the collection process of cerebral palsy (CP) and ASD data
in the EU. This will be done by comparing datasets from five countries: Sweden, The Netherlands, England, France and Denmark. Risk factors found in more than one of the
populations as well as risk factors found to be associated in only one
population will both be included in the guide. The reason for including the
unique factors in the guide is that the lack of association in other
populations can be due to different criteria or methods and not necessarily
because of a direct lack of association, and this needs to be tested.
It is important to mention that as of April 2008, the
Welsh Assembly Government has been implementing a 10yr ‘ASD Strategic Action
Plan for Wales’. This all-age government strategy includes the
appointment of a national implementation manager; the recruitment of
lead co-ordinators for autism in each of Wales’ 22 Local Authorities; extensive
training of a range of health, social care and education and commissioning
practitioners; awareness-raising work with related areas including mental
health, the criminal justice system and the general public. The
strategy is being benchmarked and will be monitored by a stakeholder group. Wales is the first European country to have adopted such a policy in support of people
affected by ASD.
18.104.22.168.5. Future developments
Reports of increased prevalence of Autism Spectrum
Disorders (ASD) from 4 per 10,000 to 66 per 10000 children in the last 20 years
have alerted the scientific community and public health sector. Although both
the nomenclature and the classification criteria used to define autism have
changed over the years, these changes do not prevent some comparative analysis
and do not fully explain the major differences in reported prevalence over
time. The methodology to measure prevalence and the case definition of ASD in
Europe is still not fully harmonized, while in many of the newer Member States
there is very little or no information available on ASD. This situation needs
to be addressed and the EAIS project is in the process of developing a protocol
for a harmonised ASD information system in Europe.
Tools have been developed for early detection and
diagnosis of the disorders, particularly in the United States of America and Great Britain. At European level, however, the early detection and diagnosis of children
with autism varies enormously from country to country. Among other factors,
this depends on the number of trained personnel and the health services
structure and whether or not ASD is actively screened for; in this chapter we
have highlighted the fact that attention to ASD is lacking in most Member
There is no general policy for education and health
services for people and families affected by ASD in Europe. The initiative by
the Welsh Assembly to implement a ten-year Strategic Action Plan for ASD is to
be applauded and promoted among European countries.
Blaxill MF (2004): What’s Going On? The Question of Time
Trends in Autism. Public Health Reports, Nov-Dec.
Fombonne E (2005): Epidemiology of autistic disorders and
other pervasive developmental disorders. Journal of Clinical Psychiatry 2005,
66 (suppl. 10)
Knapp M, Romeo R, Beecham J (2007): The economic
consequences of autism in the UK. Foundation for People with Learning
Sánchez-Valle E et al (2007): Estimating the Burden of
Disease for Autism Spectrum Disorders in Spain in 2003. Journal of Autism and
Development Disorders, 10.
Epilepsy is a chronic clinical disorder affecting both
sexes and all ages with a worldwide distribution. Epilepsy is a symptom complex
arising from a number of disordered brain functions. The cardinal
manifestations of epilepsy are the epileptic seizures, which are recurrent paroxysmal
episodes of brain dysfunction characterized by stereotyped alterations in
behaviour and reflecting the neural mechanisms involved by the epileptic process.
Incidence of epilepsy is expected to increase due to the greater longevity of
the European population. Epilepsy is linked to educational difficulties,
unemployment, socio-economic disadvantage and co-morbidity. Raising of
awareness and public education are necessary to diminish the stigma associated
While all people with epilepsy experience seizures, not
all individuals with seizures have epilepsy. Epileptic seizures may occur in
the context of a brain insult (systemic, toxic or metabolic). These events
(provoked or acute symptomatic seizures) are simply an acute manifestation of
the insult and may not recur when the underlying cause has been removed or the
acute phase has elapsed. Epilepsy in remission with treatment is defined by the
absence of seizures for at least five years in patients still receiving
antiepileptic drugs (AEDs)(Commission, 1993). Epilepsy in remission without
treatment (terminal remission) is seizure remission for at least five years in
patients off medications at the time of ascertainment (Commission, 1993). These
cases add up to the so-called inactive epilepsy. In contrast, epilepsy is the
occurrence of two or more unprovoked seizures (Commission, 1993). An unprovoked
seizure is a seizure or a flurry of seizures occurring within 24 hours and in
absence of precipitating factors. Unprovoked seizures include events occurring
in the absence of a recognized etiological or risk factor (idiopathic and cryptogenic seizures), in patients with
previous stable (non-progressing) CNS insults (remote symptomatic seizures), or in those with
progressive CNS abnormalities such as brain tumours, genetic, metabolic or
degenerative conditions (progressive symptomatic seizures). Unprovoked seizures
may be single or recurrent. Although all patients with single unprovoked
seizures may have “potential” epilepsy, seizure recurrence can be observed only
in about one-half of cases (Berg & Shinnar, 1991). The difference between
provoked and unprovoked seizures and between isolated and recurrent seizures is
relevant to the interpretation of the main epidemiological indexes. Although
epilepsy is, by definition, a chronic clinical condition, about two-thirds of
patients achieve seizure remission, most of whom immediately after treatment
initiation (Forsgren, 2004). Active epilepsy is defined as having at least one
seizure in the preceding 5 years regardless of treatment with AEDs (Commission,
1993). Intractable epilepsy still requires a standard definition. In a
prospective U.S. cohort of childhood-onset epilepsy (Berg et al, 2001),
intractability was intended as failure on two or more antiepileptic drugs and
one or more seizures a month over 18 months or longer.
22.214.171.124.2. Data sources
The patients with epilepsy enrolled in the epidemiological
studies should be representative of the general epilepsy population. Thus,
multiple sources of cases must be explored to maximize case ascertainment. The
large majority of population-based surveys have been conducted on all patients
with epilepsy or in patients in different age groups (children, adults,
The socio-cultural background of the populations at risk
may be a strong confounder when different populations are compared. Reference
figures from the entire national population have been made available only for
With few exceptions, in Europe the information existing
on the epidemiology of epilepsy was largely obtained from small or medium-size
populations where community-based surveys were conducted (Forsgren et al, 2005).
In these studies, the disease was diagnosed through a careful history, which
relies on the attentiveness of the patient and his/her family, on the emotional
and social impact of the seizures, and on the capabilities of the available
health care facilities. Although a causative agent can be identified in some
instances, in the majority of patients with epilepsy no cause can be found and
the diagnosis is only descriptive. The differential diagnosis of epilepsy
encompasses a number of clinical conditions characterized by transient
alteration of consciousness and/or behaviour, which may explain the possibility
of false-positive and false-negative diagnoses. These limitations may be a
possible explanation of the heterogeneity of the frequency, course and consequences
of the disease in Europe and in the rest of the world.
To our knowledge, there are no European national or
regional population-based registries.
description and analysis
In Europe, the incidence, prevalence and mortality of
epilepsy are fairly homogeneous across countries. The results of surveys
reporting rates at variance with those of the majority of reports can be
largely explained by suboptimal case ascertainment or by flaws in the study
Based on these findings, one expects that, at least in Europe, genetic susceptibility and the distribution of environmental risk factors to be
Thirteen incidence studies carried out in Europe have been identified, mostly from the northern and Western parts of the continent
(Table 126.96.36.199.1). The annual incidence of all unprovoked seizures in these
studies ranges from 44 to 73 per 100,000, while the incidence of epilepsy
ranges from 24 to 57 per 100,000 (Forsgren et al, 2005; Olafsson et al, 2005).
The incidence is higher in children and in the elderly (Table 188.8.131.52.2), even with significant
changes across studies. This is most probably due to the different populations
at risk, the extent of case identification and the study design.
Table 184.108.40.206.1. Incidence of epilepsy
Table 220.127.116.11.2. Incidence (per
100,000) of epilepsy in Europe, by age
With one exception (Cockerell et al, 1995), the incidence
of epilepsy and unprovoked seizures in Europe has been reported to be higher in
men than in women, although this finding does not attain statistical
significance in the large majority of reports. The different distribution of
epilepsy in men and women can be mostly explained by the differing genetic
background, the different prevalence of the most common risk factors in the two
sexes and the concealment of the disease in women due to socio-cultural
In incidence studies, the proportion of cases with
documented etiology has been reported to vary from 31 to 56% (Forsgren et al,
2005). The differences are mostly explained by the structure of the population
at risk, the prevalence of the etiological factors in the local environment,
the study design and the extent of the diagnostic ascertainment.
Cerebrovascular disorders are the most common etiological factors (14-21%)
followed by trauma (2-16%) and neoplasms (6-10%).
There are only few observations on the temporal trends of
epilepsy in Europe. No overall trends have been observed. In one study
(Cockerell et al, 1995) age-specific incidence rates of epilepsy tended to
decrease in the younger age groups and increase in the elderly. These findings
are partly in contrast with reports from Italy (Granieri et al, 1983) and Sweden (Blom et al, 1978; Sidenvall et al, 1993), which showed a decrease with time of the
incidence of the disease, mostly in children. Although an improvement in
perinatal care and the increasing use of prophylactic measures against
neurodevelopmental disorders can be likely explanations of the decreasing
incidence of epilepsy in children, the introduction of more specific diagnostic
tests has perhaps contributed to a decrease of false positive diagnosis.
An increasing incidence of epilepsy in the elderly has
been consistently reported in Northern and Southern Europe. This observation
can be attributed to the increased life expectancy (followed by an increasing
occurrence of age-related epileptogenic conditions such as stroke and
degenerative CNS disorders) and to an increased ascertainment of the disease in
this age group.
There are only few reports on the incidence of epileptic
syndromes in Europe. In Iceland (Olafsson et al, 2005), the incidence of single
unprovoked seizures and epilepsy was prospectively studied by applying the ILAE
international classification categories (Commission, 1989). Special syndromes
(represented by an isolated seizure or status epilepticus) occurred in 41% of
cases (incidence 23.5 per 100,000 per year). Undetermined epilepsy (without
unequivocal evidence of generalized and focal features) occurred in 15% (8.7
per 100,000 per year), cryptogenic localization-related epilepsy in 16% (8.8
per 100,000 per year), symptomatic localization-related epilepsy in 15% (8.4
per 100,000 per year), and idiopathic generalized epilepsy in 6% (3.4 per
100,000 per year). In Bordeaux, France, the incidence of the most common
syndromes was generally lower. The rate was 15.3 per 100,000 for
localization-related epilepsies (idiopathic 1.7; symptomatic 13.6), 6.7 per
100,000 for generalized epilepsies (idiopathic 5.6; symptomatic 1.1) and 1.9
per 100,000 for undetermined epilepsies (Loiseau et al, 1990). Some of the
differences between the Icelandic and the French study can be mostly explained
through accuracy in case ascertainment and selection bias. However, the most
remarkable difference was found for undetermined epilepsies, which reflect a
more or less stringent application of the ILAE syndromic classification and the limitations of this
classification for epidemiological purposes.
There are numerous studies on the prevalence of epilepsy
in Europe (Forsgren et al, 2005). The overall prevalence of active epilepsy
ranges from 3.2 to 7.8 per 1,000 (Table 18.104.22.168.3). The prevalence is lower in
infancy and tends to increase thereafter, with the highest rate occurring in
the elderly. As with incidence, prevalence of epilepsy tends to prevail in men.
However, this finding is not consistent across studies and, with few
exceptions, is not statistically significant. In individual studies, the
dominance in females and males has been found to shift between age groups. The
percentage of cases with documented etiology in prevalence studies has been shown
to vary from 25 to 51% (Beghi, 2004). The main etiological factors are
virtually the same as those reported in incidence studies (see above).
Table 22.214.171.124.3. Prevalence of active epilepsy in Europe
Modified from Forsgren, 2004 and Forsgren
et al., 2005
5-14 years - = 6-12 years MR = Medical record P = Pediatricians
∆ = 6-16 years Ø = 6-14 years GP = General
practitioners CM = Community members (*) Reference listed in original source
Partial seizures are more common than generalized seizures
both in children and adults. As shown by Forsgren (2004) in prevalence studies
made on adults from industrialized (largely European) countries, partial
seizures were reported in 55-60% of cases, generalized seizures in 26-32%, and
unclassifiable seizures in 8-17%. The corresponding numbers in children were
respectively 36-66%, 30-62%, and 2-4%. The differing proportions of partial and
generalized seizures may be largely explained by the different distribution of
epilepsy syndromes in children and adults.
In contrast with incidence, the prevalence of epilepsy
syndromes has been calculated in several recent reports, all from the
Scandinavian and Baltic countries. In a study made on children in Estonia (Beilmann et al, 1999), the prevalence of idiopathic epilepsies was 1.2 per 1,000,
while that of cryptogenic epilepsies was 1.0 per 1,000. In another study of childhood epilepsies in Lithuania (Endziniene et al, 1997),
localization-related epilepsies were the most common syndromic category (1.5
per 1,000) followed by generalized epilepsies (1.3 per 1,000) and undetermined
epilepsies (0.6 per 1,000). Localization-related epilepsies were the
predominant syndromic category in 41-54% of cases from Sweden, Finland and Norway, followed by generalized syndromes (37-48%) and unclassified syndromes
(5-10%)(Eriksson & Koivikko, 1997; Sidenvall et al, 1993; Waaler et al,
2000). The prevalence of specific syndromes in these countries was as follows:
idiopathic partial epilepsy with centro-temporal spikes 5-17%, absence epilepsy
6-8%, juvenile myoclonic epilepsy 1-5%, West syndrome 0.5-8%, and
Lennox-Gastaut syndrome 2-6%.
Socio-economic background has been found to affect the
frequency of epilepsy reports. In a study made in Wales, U.K., a strong
independent correlation was detected between the prevalence of epilepsy and
social deprivation, defined by unemployment, no car in the household,
overcrowded households or households not occupied by the owner (Morgan et al,
The mortality rate due to epilepsy ranges from 1 to 8 per
100,000 population per year, but international vital statistics give annual
mortality rates at 1-2 per 100,000 (Massey et al, 1985).
In a population-based cohort of patients with
childhood-onset epilepsy followed up for 35 years, a mortality rate of 6.23 per
1,000 person-years was reported (Sillanpaa et al, 1998). In this cohort, the
probability of survival at 10, 20 and 40 years after seizure onset was 0.94
(95% CI 0.91-0.97), 0.88 (95% CI 0.84-0.92), and 0.75 (95% CI 0.74-0.86),
Based on a meta-analysis of studies investigating
mortality in the past 100 years, the SMR for epilepsy in Europe was found to
range from 1.6 to 9.3 in community-based studies and 1.9-8.7 in institutionalised populations (Shackleton et al, 2002). In prospective and retrospective
incidence cohorts, the SMR for epilepsy ranges from 1.6 to 5.3 in children and adults (Jallon, 2004) (Table
126.96.36.199.4). These data are confirmed when limiting the analysis to prospective
and retrospective incidence cohorts (Jallon, 2004).
These rates were not significantly different from those of
selected populations followed during different periods. The higher SMRs
reported by the French and Swiss studies may be partially explained by the
inclusion of acute symptomatic seizures.
188.8.131.52.4. Community-based studies of mortality in epilepsy
from Shackleton et al, 2002
Preston and Clarke, 1966(*)
Loiseau et al., 1999
Olafsson et al.,
Lindsten et al.,
Nilsson et al, 1997
Lhathoo et al.,
GP: General practitioner; MF:
Medical facilities; SMR: Standardized mortality ratio; (*)Reference
listed in original source.
Aetiology of epilepsy is one of the strongest predictors
of mortality in epilepsy. Patients with symptomatic epilepsy have a two- to
six-fold mortality risk than the general population. Patients with a CNS lesion
presumed to be present at birth have the highest mortality, with a SMR between
7 and 50 (Forsgren, 2004). Remote symptomatic seizures and refractory epilepsy
mostly account for the increased mortality in childhood-onset epilepsy. Mortality is greater in men than in
women, as shown in most population-based studies. Most studies have also
detected an inverse correlation between SMR and age. In neurologically normal
children with idiopathic or cryptogenic epilepsy in remission, mortality does
not appear to be substantially higher than that of the general population. The
highest mortality in children may be thus explained by the rate expected in the
general population, which is lower in children, and by the higher proportion of
neurodeficits in this age group. In the Finnish cohort of patients with
childhood epilepsy followed into adulthood (Sillanpaa et al, 1998), patients not
in remission had a 9.3 RR of death (95% CI 3.8-22.7) compared with patients in
5-year remission. There is also an inverse correlation between SMR and duration
of epilepsy during the first 10 to 14 years of disease. Generalised
tonic-clonic seizures have been associated to an increased mortality in several
studies from Europe. In contrast, data regarding the mortality in patients with
partial seizures are inconsistent. Status epilepticus is associated to
significant mortality. In prospective population-based studies, the CFR reached
39% (Vignatelli et al, 2003). Although the idiosyncratic reactions and the
oncogenic potential of AEDs is well-known, drug-related deaths cannot be
estimated, as comparative estimates of the rate of occurrence of such deaths per
treatment-years are not available.
Differient mortality rates have been found for different
epileptogenic conditions. Accident-related deaths range between 1 and 6% of all
deaths, with SMR ranging between 2.4 and 5.6 (Gaitatzis and Sander, 2004).
Patients with epilepsy are reported to be at higher risk of suicide than the
general population. However, the PMRs range from 0 to 20% and the SMRs from 1
and 5.8. The wide difference in rates may be mostly explained by the small size
of the studied populations and the different methods of analysis. Patients with
severe epilepsy have a fivefold and patients with temporal lobe epilepsy a
25-fold increased risk of suicide (Barraclough, 1987). Suicide rates may be
even higher (SMR 87.5; 95% CI 35-180) in patients with temporal lobe epilepsy
undergoing surgical treatment (Harris & Barraclough, 1997). Antipsychotic
drug intake was associated with a 4-fold increase in the risk of suicide in a
Swedish case-control study (Nilsson et al, 2002), after adjusting for psychiatric
illness and alcohol abuse. Psychiatric comorbidity, psychosocial stressors and
iatrogenic factors may thus explain the increased risk of suicide in patients
with epilepsy. While seizure-related mortality is rare in new onset epilepsy,
in patients with chronic epilepsy most deaths appear to be seizure-related
(Tomson et al, 2004). In these populations, sudden unexpected death (SUDEP)
accounts for 24-67% of all deaths (Pedley and Hauser, 2002). SUDEP is defined as a
non-traumatic, unwitnessed death occurring in a previously healthy patient with
epilepsy in whom no cause of death is detected even after post-mortem
examination. The incidence of SUDEP ranges from 1 per 1,000 in prevalence studies (O’Donogue and Sander, 1997) to 3.5 per 1,000 in incidence studies (Nashef et al, 1995). The patient at risk for SUDEP is a young or middle-aged person with
chronic refractory epilepsy, generalized tonic-clonic seizures and a
complicated and unstable treatment (Jallon, 2004). SUDEP is rare in
community-based series of childhood epilepsy (Callenbach et al, 2001). In most
cases, SUDEP is triggered by a seizure with seizure-induced cardio-respiratory
alterations representing a plausible hypothesis (Nashef et al, 1996).
In patients undergoing epilepsy surgery, the SMR was found
to range from 4.5 to 32 (Jallon, 2004). In a population-based study comparing
SMR and SUDEP in surgical patients, the SMR (all causes) was 4.9 (95% CI
2.7-8.3) vs. 7.9 (95% CI 2.6-18.4) in non-surgical patients, while the
incidence of SUDEP was 2.5 vs. 6.3 per 1,000 (Nilsson et al, 2003). There is
some indication that carbamazepine could increase the risk of SUDEP by causing
arrhythmia or altering the cardiac autonomic function.
The term “comorbidity” is used here to define the
contemporary occurrence of more than one clinical condition in the same person.
There are limited European data on the cumulative incidence (Beghi and
Cornaggia, 2002) and the prevalence of comorbidity in patients with epilepsy
(Gaitatzis et al, 2004). Records were taken of any medical event occurring in a
1-2 year period in a large cohort of children and adults and matched controls
enrolled in referral centres from eight European countries (Italy, Germany,
Holland, UK, Portugal, Russia, Estonia, and Slovenia) and followed
prospectively (Beghi and Cornaggia, 2002). The cumulative probability of
illness by 24 months was 86% in patients with epilepsy and 75% in controls
(p<0.0001). The cumulative probability of accident was 27 and 17%
respectively (p<0.0001). Illnesses and accidents were mostly trivial and 24%
were seizure-related. A cross-sectional population-based survey of somatic and
psychiatric comorbidity in adults was undertaken in the UK using the General Practice Research Database (Gaitatzis et al, 2004). The ICD-9 coding
system was used for disease classification. Patients with and without epilepsy
were compared. Several somatic disorders were significantly more common in
people with epilepsy than in non-epileptic controls, with differing prevalence
ratios (PR) when comparing individuals aged 16 to 64 to those aged 65 or more.
Brain tumors, cerebrovascular disorders and Alzheimer’s disease were, in
decreasing order, the clinical conditions with PR greater than 10 in patients aged 16-64 and greater than 5 in patients 65+. A greater than two- to six-fold risk of
psychiatric comorbidity was found in patients aged 16 to 64, organic psychoses,
alcohol dependence and hysteria being the most common conditions. In patients
aged 65 or more alcohol dependence was the most common comorbid disorder (PR
6.1) followed by schizophrenia (PR 5.8).
Treatment of epilepsy is generally started at the time of
diagnosis, which is made when at least two unprovoked seizures have occurred. A
population-based study done in the UK on the long-term prognosis of treated
epilepsy reported a 69% cumulative 5-year remission rate at 9 years of age (Cockerell et al, 1995). The 5-year
remission rate at 10 years was 61% in adults (Lindsen et al, 2001) and the 3 to 5-year remission
rate at 12-30 years of age children was 74-78% (Forsgren, 2004). In the Finnish
cohort of patients with childhood-onset epilepsy, 64% of cases were in 5-year
terminal remission off medications (Sillanpaa et al, 1998).
About 25-50% of children with epilepsy experience some
degree of educational difficulties (Anonymous, 2003). An old study made on the
Isle of Wight found children with epilepsy of average intelligence exhibiting
at least 2-year retardation in reading skills (Rutter et al, 1970). A more
recent UK study showed 53% of children with epilepsy attending mainstream
schools were coping at a below average level and 16% were seriously behind
(Thompson, 1995). Studies made in Finland showed that 27% of children with
epilepsy did not complete basic or required education (Sillanpaa, 1992). An
international cohort study involving Western and Eastern European countries
(RESt-1 Group, 2000) showed comparable levels of education in patients with
epilepsy and non-epileptic controls. In Italy, a high proportion of teachers
was found to be very poorly prepared for having children with epilepsy in their
classes (Pazzaglia and Frank-Pazzaglia, 1976). To our knowledge, there is no
evidence that epilepsy education of teachers has improved.
People with epilepsy experience difficulties in finding
and maintaining regular employment. Unemployment and underemployment rates are
generally higher in patients with epilepsy than in the general population
(Smeets et al, 2007). However, most studies on epilepsy and employment have
been performed in selected clinical samples and differing definitions of
employment problems. Social stigma has long been considered an explanation for
the under- and unemployment rates and the unnecessary job restrictions adopted
in patients with epilepsy. However, recent studies have indicated an
improvement of the public attitude towards people with epilepsy (Jacoby et al,
2004). In addition, unemployment rates are fairly low (15%) in adult patients
with newly diagnosed idiopathic or remote symptomatic epilepsy from several
Western and Eastern European countries (RESt-1 Group, 2000). Higher seizure
frequency is associated with higher rates of unemployment (Smeets et al, 2007).
Psychosocial factors also tend to affect employment. These include fear and
limitations on lifestyle (Fisher, 2000), intelligence, education, personality,
age, psychosocial and neuropsychiatric functioning (Batzel et al, 1980; Fraser
et al, 1983). Job restrictions are common in European countries, particularly
in Central and Eastern Europe, where unemployment rates are even greater than
those of Western Europe (Anonymous, 2003). These findings are in contrast with
the fairly low accident rates in people with epilepsy (Van den Broek and Beghi,
2004). Intervention studies on epilepsy and vocational rehabilitation are
scarce and long-term effects of specific employment programs are virtually
unknown (Smeets et al, 2007).
In the European Union, most member states require a
two-year seizure-freedom period before granting or renewing a driving license.
In contrast, there is a significant variability of exceptions for patients with
active epilepsy (seizures during sleep or on awakening, myoclonic jerks, and
simple partial seizures)(Table 184.108.40.206.5). The issue of epilepsy and driving
varies depending on the patient’s or the health authority’s perspective (Beghi
and Sander, 2005). From a patient’s perspective, the risk of seizure-related
accidents (rate ratio, RR 1.8)(Vaa, 2005) and the risk of serious accidents (RR
1.4)(Taylor et al, 1996) may be too high. From the health authority
perspective, however, the proportion of accidents attributable to epileptic
seizures is extremely low, ranging from 0.02 to 0.2% (Black and Lay, 1997;
Sheth et al, 2004). In addition, mandatory reporting of epilepsy may have
negative implications as it affects the patient-doctor relationship.
Table 220.127.116.11.5. National legislations on epilepsy and driving in Europe
Country Group Seizure
freedom Exceptions (ban)
Belgium I 12 months First unprovoked
seizure (6 months)
seizure, idiopathic (3 months)
not impairing driving (3 months)
during sleep, with pattern established
months (no AED; First unprovoked seizure (5 years)
normal EEG) First
provoked seizure (2 years)
Croatia I 24 months Ban in people taking
Denmark I 12 months Seizures during
sleep (license valid 1 year;
years if seizure freedom >2 years; 5 years
seizure freedom >4 years)
unprovoked seizure (6 months)
months (taxi 120; Must be off AED for 5 years; license valid for
bus 240) 5
Estonia I 24 months -
II - Prohibited
Finland I 12 months First unprovoked
seizure with normal
tests (3 months)
seizures (6 months)
II - Prohibited
France I 12 months Seizures only on
II 24-60 months No
seizures in previous 3 years
Germany I 12 months Single seizures or
seizure, idiopathic (3-6 months)
stop (ban 3 months)
II 60 months (no AED) First
seizure, idiopathic (24 months)
Ireland I 12 months Seizures
during sleep established by 1 year
Italy I 24 months -
II - Prohibited
Netherlands I 12 months First unprovoked
seizure (6 months)
unprovoked, idiopathic seizure (3 months)
seizures (6 months)
single partial seizures (3 months)
stop/change (ban 3 months)
months (no AED; Untreated first unprovoked seizure and no
EEG epileptiform epileptiform EEG (2 years)
Norway I 12 months Drugs stolen or last
seizure in particular
II 120 months (taxi) -
Sweden I 24 months Single unprovoked
II 60 months (taxi) -
Switzerland I 12 months -
United Kingdom I 12 months Seizures during
sleep with pattern established
II 120 months (no AED) Medical
I = Non commercial driving; II = Commercial driving;
AED = Antiepileptic drugs; EEG = Electroencephalogram.
Control tools and policies
Disease severity and poor seizure control affect patients’
education, employment, driving and other daily life activities. However,
psychosocial factors and stigma have also been considered as discriminating
reasons for patients with epilepsy Although one gets the impression of a better
attitude of the society towards epilepsy, patients with epilepsy still face
relevant problems in having equal opportunities in several aspects of social
life. This issue is further complicated by the lack of harmonization of the
national regulations across European countries.
The Second European Working Group on Epilepsy and Driving
(SEWGED) has been appointed by the Driving License Committee of the EU in 2004.
This group, which was represented by a number of experts in the field of
epilepsy, collected all the available information on national driving
regulations and outlined the main disease characteristics to adapt the present
regulations to the different aspects of the spectrum of the disease and achieve
harmonization across Europe. On April 27 2005, the SEWGED submitted a report to
the EU Driving License Committee.
The Public Education Commission of the IBE produced a
policy statement “Towards a universal understanding of epilepsy”. This
statement aims at summarizing the current scientific position on epilepsy and
recommends a set of core facts that a lay or professional audience could
understand (Anonymous, 2003). The ILAE Employment Commission recommends a
non-discriminatory policy for hiring people with epilepsy and considers that
job restrictions are discriminatory unless based on an individual assessment
(Employment Committee of the IBE, 1989). Reports from various European
countries indicate that employment training programmes for people with epilepsy
achieve better results than state agencies (Anonymous, 2003). The elements of
these programmes include neuropsychological assessment, vocational training,
interview technique (including disclosure) and specialized placement and
Lay associations, which are present in any EU member
state, have a fundamental role in promoting education on epilepsy towards
patients, their relatives and all potentially involved society members.
Epilepsy and any other disabling condition should be part of the educational
programs for teachers. Teachers could be very helpful in removing prejudice
against epilepsy and stigma.
A number of guidelines and practice parameters regarding
the management of epilepsy have been developed in several European countries.
These guidelines have been endorsed by national and international scientific
associations (ILAE, IBE. Cochrane Collaboration, LICE) or by national bodies
aiming at developing evidence-based medicine measures for clinical practice
(NICE, www.nice.org.uk; SIGN, www.sign.ac.uk). Although slightly different when
addressing specific aspects of the diagnosis and treatment of epilepsy, these
instruments can be easily adopted by countries with no access to in-house
guidelines and eventually adapted to national or local situations.
Consortia of epilepsy centres and other specialized units
have been implemented in some European countries. In Italy, a network of
epilepsy centres was founded in the 90s and was helpful in improving the
diagnostic and therapeutic capabilities of each individual centre (Osservatorio
Regionale per l’Epilessia, 1996). On this basis, a more sophisticated web-based
network has been recently created in Lombardy aiming at facilitating
dissemination and storage of the clinical, laboratory and imaging data of each
enrolled patient. Such networks can be easily implemented at national or
multinational level and serve as a basis for the initiation of European
comprehensive epilepsy programs.
In the light of the available evidence, there is no need
for further studies on the incidence and prevalence of epilepsy in countries
with no population-based surveys. Given the homogeneous ethnic substrate of the
European population and the consistency of the results of the published
reports, similar incidence, prevalence and mortality rates are expected in
these countries. However, age-specific incidence rates of epilepsy in the
younger and older age groups are based on small samples of patients. For this
reason, a study of the geographic and temporal trends of epilepsy in children
and in the elderly may be needed.
Multi-national studies should be performed to identify
patients with acute symptomatic seizures, single unprovoked seizures and
recurrent unprovoked seizures (epilepsy). Cohorts of patients with a first
seizure should be prospectively followed to calculate the risk of seizure
recurrence and identify patients at high risk of epilepsy.
The variability of the legislations of the EU governments
regarding employment and driving in patients with epilepsy and the scarce
attention to the heterogeneity of epilepsy syndromes must change. Harmonization
of the national directives, to be incorporated into a unique legal compendium,
is required. In addition, in line with the recommendations of the SEWGED,
different rules should be set depending on the characteristics and the severity
of the different syndromic patterns.
With reference to the educational issues, children with
epilepsy should be admitted into local neighbourhood schools whilst recognizing
that, where epilepsy is not a single complication, adequate provision should be
made in specialist schools. Issues relating to educating children with epilepsy
should be an integral part of initial and in-service teacher-training
provision. Liaison between parents, teachers, and professional healthcare
workers is essential to the educational provision for children with epilepsy.
Increased knowledge about epilepsy amongst school children should be
Provisions should be made of high standards of care to
patients with epilepsy to reduce the risk of seizure recurrence secondary to an
incorrect management of the disease. In this regard, the published guidelines
on the diagnosis and treatment of epilepsy should be disseminated into each
European country and adapted to the local situation. Networks of health care
workers (physicians, nurses, psychologists, technicians, physical therapists,
etc.) should be implemented to guarantee a comprehensive management of epilepsy
in well-defined geographic areas. These networks should include epilepsy
centres and centres for the surgery of epilepsy. Using the available web
sources, interactions between professional health care workers should be
increased to discuss the problems posed by individual patients and exchange
information for educational, practical, and research purposes.
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18.104.22.168.2. Data sources
description and analysis
200 surveys on MS epidemiology published in the past three decades were
scrutinized, out of which a third turned out to be informative with regards to
disease burden. The most relevant epidemiological patterns of MS distribution
in time and space across Europe are summarised here. Tables 22.214.171.124.1-126.96.36.199.4
provide further details as to prevalence distribution by country, gender, age,
and incidence distribution by Country, where available.
Table 188.8.131.52.1. Prevalence of Multiple
Sclerosis in selected EUGLOREH Countries
Table 184.108.40.206.2. Prevalence (per 100
000) of Multiple Sclerosis in selected EUGLOREH Contries by gender
Table 220.127.116.11.3. Prevalence (per 100
000) of Multiple Sclerosis in selected EUGLOREH Countries, by age (best
Table 18.104.22.168.4. Incidence (per 100
000/year) of Multiple Sclerosis in Europe
Systematic surveys in the UK for more than 70 years show
three main epidemiological trends: a north-to-south gradient: the northeast
mainland and the Scottish offshore islands versus southern England and Wales; a
markedly increased prevalence up to tenfold in Wales partly related to repeated
assessments over time and increased awareness of MS; and the subsequent
tendency for the latitudinal gradient to level off. Scotland’s rates are at
least twice those of England and Wales and, despite methodological differences,
the north-to-south latitudinal gradient of MS prevalence across the UK is unquestionable, with a discrete change in risk at the Scottish border. The MS
prevalence in Northern Ireland is comparable with that in Scotland, probably because of the close ethnic origins and genetic composition of the two
populations. In Ireland, the prevalence of MS is similar to that in the UK at comparable latitudes.
The MS prevalence in the Nordic countries is notably high,
with some heterogeneity in temporal trends and across regions. The higher
prevalence rates of MS reported in some regions compared with the respective
national means was referred to as the Fennoscandian focus of MS. This extended
from western to southeastern Norway, Denmark, southern Sweden, southwestern Finland and back to northeastern Sweden. A correlation with the distribution
of environmental exposure specify to what was hypothesized.
Norway has an uneven distribution of prevalence and incidence, with
peaks in central areas. Mean annual incidence rates have increased
significantly from 3 to 6 per 100 000 per year in the western regions in the
past three decades. The clinical phenotypes also appeared to have changed in Norway over time, with increased proportions of RR- versus PP-MS and among women versus
men. A fluctuating incidence pattern was reported for Vestfold and for Hordaland County. Native Norwegians in Oslo had a prevalence rate of 136, which was higher
than that in the city’s general population. In Hordaland County prevalence was 151 in 2003. In most Nordic counties of Troms and Finnmark, largely populated by Sami, a genetically
resistant population, the prevalence increased 3.5-fold to 73 between 1973 and
Based on a registry system established in the early 1950s,
prevalence in Göteborg in southwestern Sweden was 96 in 1988, while the mean annual incidence rate was 2.6 in 1974–88. Multiple assessments carried out
in Västerbotten County in northern Sweden showed an increase of prevalence from
125 in 1990 to 154 in 1997; and a mean annual incidence rate of 5.2 in 1988–97.
In Finland, regional differences in MS prevalence and
incidence have persisted over a 30-year follow-up period, with the highest
rates reported in the western region round the town of Seinäjoki, intermediate
rates in central Finland and coastal Vaasa and relatively lower rates in
Uusimaa in the south. Prevalence increased between 1983 and 1993 in all these districts and in Vaasa, especially among women.
The DMSR provides epidemiological data on MS in Denmark that appear to be consistent with the findings in Norway and Sweden (Brønnum-Hansen et al,
2006) probably indicating a similar genetic and environmental background for
susceptibility to MS.
Iceland provides a 50-year observational period in a well-defined
and stable population. The threefold increase of MS prevalence up to 119 in 1999 compared with 1950 was related to improved case assessment over time. The MS risk in Iceland is similar to that in the other Scandinavian countries.
The MS prevalence in Germany has been rather homogeneously
distributed over time and geography, with prevalence between 83 and 127
(Pugliatti et al, 2006) and an estimated mean annual incidence rate of 4.2
(Lauer, personal data). Similar prevalence rates were found in the Netherlands, Belgium, Slovenia, Switzerland and Austria, in comparable time periods. The geographical
distribution of MS prevalence was heterogeneous in Poland, with a peak rate of 110 in the south, in the Czech Republic, with rates up to 160 in three small northern Bohemian districts, and in Hungary, with rates up to 79 in Fejer County.
Based on a nationwide survey, the estimated prevalence in France is 65 per 100 000 (Vukusic et al, 2007), and a northeast-to-southwest gradient of MS
distribution in France was shown with both morbidity and mortality studies
(Vukusic et al, 2007). Further studies showed that regional differences applied
to prevalence but not to incidence rates, indicating a focal distribution of MS
in ethnic groups with different susceptibility.
Parallel to improvement of the national health care
system, multiple large population-based assessments conducted in northern,
eastern and central Spain found prevalence rates of 32–58 and mean annual
incidence rates from 2–4 in the 1990s. Prevalence data are in the same range
Several prevalence surveys on MS have been conducted in Italy in the past two decades and some regions have been multiply assessed. The overall
prevalence and the reported increase over time in the mainland and in Sicily probably resulted from improved diagnostic accuracy, epidemiological methods,
multiple assessments and increased survival. Prevalence and incidence rates in
the island of Sardinia were significantly higher than the national mean rates
and showed a significantly increasing time trend over the past 30 years. The
4-fold increase in Malta’s prevalence rate since 1978 was explained by the
changing population age structure, generally increased life expectancy and
previous diagnoses. The genetic influence from northern Africa, an area at low
risk for MS, is believed to account for the low absolute MS risk in the
Prevalence of 39 and 21 per 100 000 has been reported for Bulgaria and Romania, respectively, with a mean annual incidence of 0.9 for Romania. Prevalence was 39 in Greece and Cyprus (Pugliatti et al, 2006), with a mean annual
incidence of 2.4 in Greece. Methodological issues, such as hospital-based study
designs and under-reporting, may account for underestimation of rates in these
In brief, prevalence in Europe ranges from approx. 20 to 190
per 100 000. Mean rates are higher in northern countries, maybe also due to a
better degree of ascertainment, i.e. for the use of registry systems and
repeated assessments over time.
Nevertheless, a certain extent of prevalence heterogeneity is
observed within Countries, so the role of environmental factors and their
interaction with the population specific genetic susceptibility in increasing
MS frequency cannot be ruled out. A tendency for a decreasing variability in
prevalence rates among and within Countries has been observed over time,
pointing to a widespread improvement of case ascertainment and survey
methodology in the same time frame. Prevalence ranges between 11 and 282 per 100 000 in women and between 10 and 123 per 100 000 in men, with female:male ratios between 1.1 and
3.4. Mean total prevalence estimates by age group varied significantly across
Countries. The highest prevalence estimates have been reported for the
population aged 35–49 for all Countries taken into consideration with the
exception of the Republic of Ireland, Northern Ireland, Scotland, and Norway, where prevalence was higher in the population aged 50–64.
The total annual mean MS incidence in Europe is estimated to
be 4 per 100 000, with peaks registered registered in Finland, Scotland, Norway and Sardinia, insular Italy.
Table 22.214.171.124.5. Proportion of Multiple Sclerosis patients by disease
course in selected EUGLOREH countries
Table 126.96.36.199.6. Proportion of Multiple
Sclerosis patients by disease severity (EDSS) in selected EUGLOREH countries
Figure 188.8.131.52.1. Distribution of total
cost of MS in Europe (year 2005) by resource use components.
Production losses and especially early
retirement (indirect costs) represent 22% of the total cost. No reliable
estimates of the cost of premature death were found in the literature, and so
could not be included in the study estimates.
A patient with mild disability at the EDSS
(the greater proportion) costs €14 300 per year, €31 200 per year if with
moderate disability, and €58 300 per year if with severe disability.
MS is a complex multifactorial disorder, in
which environmental factors supposedly interact with genetically susceptible
individuals (Noseworthy et al, 2000). The most influential risk factor for MS
is hypothesised to operate early in life. Later influences may act in
determining the risk, either with individual main effect, or primed by early
exposures and with reciprocal interaction(s). It is possible that more than one
of these effects implies there are strong possibilities that also genes operate
in determining MS risk especially at familial level. Major environmental
factors, directly or indirectly climate-related, are operative at population
level, among which vitamin D status with diet and sun exposure, early life
infections including infectious mononucleosis, and lifestyle factors also
acting early in life, such as smoking.
Control tools and policies
The importance of environmental factors and
their practical relevance for the prevention of MS have not received adequate
consideration (Ebers, 2008). Gene-environment interactions should be studied
with our advancing understanding of how genes produce specific susceptibility
towards the environment. If sunlight or vitamin D are major environmental risk
factors, studies of disease should be started although these might have a
There are no pathognomonic tests for the diagnosis of MS.
Diagnostic criteria require evidence of dissemination of neurologic signs and
symptoms in space and time based on historical, clinical and paraclinical
evidence. The most widely used criteria in MS epidemiological research over the
past two decades were the Poser Committee criteria (Poser et al, 1983),
consisting of two large categories for definite and probable MS, and relevant
subcategories: clinically definite MS (CDMS), laboratory-supported definite MS
(LSDMS), clinically probable MS (CPMS) and laboratory-supported probable MS
(LSPMS). In 2001, an international committee of neurologists headed by W. Ian
McDonald published the new diagnostic guidelines by incorporating magnetic
resonance imaging (MRI), eliminating the category of probable MS and
reintroducing that of possible MS (McDonald et al, 2001). According to these
new indications, patients can receive a diagnosis of MS or possible MS. Because
of the retrospective methods used in MS epidemiological studies and the lack of
MRI facilities in some populations, the Poser et al criteria still comprise the
most common classification in such surveys. MS is diagnosed more often
according to the McDonald et al criteria than to the Poser et al one CDMS (52%
vs 38%) (Fangerau et al, 2004).
Lastly, the lack of “attacks” and of recurrent episodes in
primary progressive forms, may lead to an underestimation of such forms when
the Poser Committee criteria are used (McDonnell and Hawkins, 1998b).
The clinical course of MS shows heterogeneity among patients
and can be rather unpredictable also in the same patient. The following
categorisation of MS clinical course has been reported (Lublin and Reingold,
1996): (a) relapsing-remitting MS (RR-MS), a clearly defined disease with
relapses with full recovery, or with sequelae upon recovery and periods between
relapses characterized by a lack of disease progression, (b)
progressive-relapsing MS (PR-MS), progressive disease from onset with clear
superimposed relapses - with or without full recovery - and periods between
relapses characterized by continuing progression; (c) secondary-progressive MS
(SP-MS), initial RR course followed by progression with or without occasional
relapses, minor remissions and plateaus; (d) primary-progressive MS (PP-MS),
disease with progression from onset with plateaus and temporary minor
Due to the cross-sectional or historical design of most
epidemiological studies on MS, the disease course is often more simply
categorised into RR-MS, secondary progressive (SP-MS) and chronic progressive
(CP)- or PP-MS (Ebers, 1998) and is based on prevalent cases. It is often
unclear whether PR courses are lumped to RR or PP ones.
Several scales have been used to measure disability in MS,
aimed at evaluating the efficacy of interventional programs. In MS
epidemiological descriptive research, the burden of disability is most
frequently presented as Kurtzke’s Expanded Disability Status Score (EDSS) for
prevalent cases (Kurtzke, 1983). Disability due to MS can be measured within
functional neurological systems (pyramidal, cerebellar, brainstem, sensory,
bowel and bladder, visual, cerebral, other) by assigning to each of them a
score. The distribution of the scores over the functional systems combined with
their degree is then assigned to one of the 20 categories (0, 0.5, 1, etc. to
10) which indicate the level of disability. Further lumping is often needed
when precise scores cannot be assessed in historical or cross-sectional studies
so that EDSS 0 to 3.5 refers to fully ambulatory with the most moderate
disability in at least one functional system, 4.0-6.5 refers to fully
ambulatory, although relatively severe disability, eventually constant
bilateral assistance needed to walk 20 m; 7.0 to 9.5 refers to patients restricted to wheelchairs, confined to bed and totally helpless and 10 is death
due to MS.
There is no cure for MS, but there are drugs able to slow
down the underlying pathogenetic process and help control symptoms. Goals for
treating MS may include reducing the number of attacks, improving recovery from
attacks and halting further progression of the disease. Based on available
evidence, early, aggressive treatment is warranted in all patients with MS or
at risk of developing MS (eg., ‘clinically isolated syndromes’). Identifying
benign cases in the early stages of MS is difficult and there is evidence that
treatment with interferon beta has beneficial effects on the central nervous
system (CNS) inflammation compared to placebo.
Five disease-modifying therapies for the initial management
of MS are available in Europe, i.e., beta-interferons 1a and 1b, glatiramer
acetate and natalizumab, a monoclonal antibody against blood-brain barrier
constituents. Mitoxantrone is sometimes used for the treatment of worsening
forms of RR- MS and SP-MS. Besides the method and frequency of administration
of these drugs (injections and up to every day), side effects can interfere as
well interferons with the quality of life and productivity of MS patients’ . An
understanding of the potential side effects of these drugs is critical for the
patients to ensure compliance. Other drugs are used, such as azathioprine,
intravenous immunoglobulins (IVIG), cyclophosphamide. A number of drugs are
being tested some of which have shown satisfactorily preliminary results:
lamotrigine, campath-alemtuzumab, FTY 720-fingolimod, anti IL 2 receptor
monoclonal antibody, teriflunomide, daclizumab and cladribine.
Rehabilitation in MS implies comprehensive,
multidisciplinary, individualised, coordinated rehabilitation programmes
(Miller et al, 2006). Also, home-based care has been shown to be more
cost-effective, and achieve important gains in measures of general health,
pain, role-emotion, and social function, regardless of functional status.
Directive on Equal Treatment in the Work Place
Council Directive 2000/78 EC, prohibits direct and indirect
discrimination on the grounds of disability, and introduces the concept of
reasonable accommodation whereby the employer is obliged to accommodate the
needs of suitably qualified disabled people by adapting premises, work schedules
or job descriptions so that they can be employed. The impact of the Directive
on EU citizens with multiple sclerosis has not yet been analysed; however, the
onset of multiple sclerosis often occurs at the prime of life, when people have
significant economic and social responsibilities. A European wide survey and
analysis (Sobocki et al, 2007) revealed the positive psychological and physical
benefits of job retention that can reduce the progression of the disease, yet
many people affected by MS are forced to give up work due to lack of support.
The Framework Directive on equal treatment in the work place
is an important basis upon which to challenge this discrimination; the concept
of ‘reasonable accommodation’ within the Directive should be interpreted to
include flexible working, rest periods, the necessary work adaptations and a
social protection safety net to respond effectively to the symptoms of MS and
ensure both access and dignity.
Much more focus is required however to ensure that the Directive
has the right impact on the relations towards people affected by MS. The Code
of Good Practice on MS ( see below) calls for information and awareness-raising
programmes for employers, co-workers and for those diagnosed with MS regarding
the Directive, its scope and its potential both as an advocacy tool and for
seeking individual redress.
A new study on MS and employment in the EU is in its final
phases and results will be made available in scientific literature.
Early published studies on MS patients and their employment
situation focused on identifying factors that differentiated the employed from
the unemployed for predicting which type of individuals were at risk for
leaving the workforce. The most important of these early studies (Larocca,
1985) identified disease and demographic characteristics (age, gender,
education, disability level) that were directly associated with employment
status, but accounted for only 14% of the variation between employed and
unemployed individuals with MS. The important conclusion of this report was
that most variations seem due not to the severity of the disease or to
demographic differences but to pre-morbid personality, coping style, workplace
characteristics and social support. With the exception of pre-morbid personality,
appropriate interventions can address these other factors in a way that
promotes the individual’s ability and desire to stay in the workforce. Keeping
people with MS in the workforce can be beneficial for society in general, as
well as for the self-esteem and economic security of the individual. Currently,
there are no comprehensive data available on the employment situation of people
with MS in Europe, but only reports from a few individual countries, with
varying study designs that preclude a comparison of results.. The primary
objectives of the new study are to generate data that will substantiate
national service provision planning and European-level lobbying by:
the general employment situation in a sample of European countries (i.e. number
of unemployed people due to MS, number of people actively seeking employment,
number of currently employed people and at/not at risk for job loss);
demographic and disease characteristics that differentiate employed from
unemployed people with MS;
factors that enable employed people with MS to stay in the workforce;
the impact of a variety of factors that influence a person’s choice/ability to
maintain employment. The outcomes of the study will be published on an international,
peer-reviewed, scientific journal reporting the results. The report will be
used at national level to promote the rights of people with MS to obtain and
maintain employment, without discrimination, architectural barriers or other
cultural, social, psychological or physical obstacles. The report will also be
used to promote, at European Union level, the employment of people with MS to
help guarantee appropriate interpretation and application of the EU directive
on employment of the disabled throughout the Union.
Parliament Resolution on the effects of discriminatory treatment towards people
with MS in the European Union
In December 2003 the European Parliament adopted
unanimously a resolution and report26 concerning the effects of
discriminatory treatment towards people with multiple sclerosis within the
European Union) based upon a petition submitted by a British person with
Multiple Sclerosis, Louise McVay. This report was actively supported by the
European Multiple Sclerosis Platform and all EU Multiple Sclerosis Societies.
Health Departments in most member states of the Union provided information
which was used for the preparation of the report.
The contents of the report, presented by Parliament’s
Rapporteur Uma Aaltonen from Finland -herself a person with MS - analysed the
experiences of people with MS in Europe. It did so with regard to the type of
medical support they were able to obtain from their respective health services,
as well as in relation to their social and family environment, and in
particular their employment prospects.
Paragraph 1 of the substantive resolution
adopted by the Parliament urged the Ministers of Health of the European Union
to develop a “Code of Best Practice” for MS patients.
European Code of
Good Practice on the Rights and Quality of Life of People Affected by MS
The Code was drawn up in spring 2005 as follow up to the
above European Parliament Resolution It is targeted towards all stakeholders in
the lives of people affected by MS, including policy makers and administrators,
the medical profession, the corporate sector, volunteers, families, and of
course, the person affected by MS.
The Code is a political instrument that outlines briefly
the issues of fundamental importance to people affected by MS. It provides a
practical framework that describes in general terms:
optimal approach in relation to treatments, therapies and services, research,
employment, and empowerment of people affected by MS;
It signposts core consensus documents and materials
that are endorsed by both the medical and patient community;
commits national governments and the European Commission to an independent
monitoring system that will feed into the open method of coordination on public
The Code describes good practice in four key areas
critical to the health and Quality of Life of People affected by MS.
rights and access to treatment, therapies and services in the management of
shared agenda in MS research;
and Job retention
The European Parliament, the European Commission and the
German Health Minister Ulla Schmidt, during the German Presidency of the
European Union endorsed the European “Code of Good Practice” on Multiple
Sclerosis and its reference documents. Implementation of the Code at national
level will help overcome the currently unacceptable inequalities in the
diagnosis, treatment and care of people with ms within and across the EU Member
EU Consensus documents and reference papers in the
areas of MS referred to in the Code
European Map of Multiple Sclerosis, (www.europeanmapofms.org)
The European Map of MS database provides information and
data on the epidemiology of MS and the availability and accessibility of
resources for people with MS at country level. The contents of the database can
be searched and illustrated through maps, charts or spreadsheets in the data
query section. The whole database will be updated every four years. Data will
also be collected on an ongoing basis from countries that have not yet
submitted data and new data will be collected for new categories and sub
categories as and when necessary, for example when a new treatment becomes
Immunomodulatory Therapy of MS Consensus Paper
therapeutic recommendations, from the updated and edited version 2007 (MSTCG,
2007) of the original report 2006 (MSTCG and Rieckmann, 2006)
Recent clinical studies in MS
provide new data on the treatment of clinically isolated syndromes, secondary
progression, direct comparison of immunomodulatory treatments and dose issues.
All these studies have important implications for the optimised care of MS
patients. The multiple sclerosis therapy consensus group (MSTCG) critically
evaluated the available data and provided recommendations for the application
of immunoprophylatic therapies.
on Rehabilitation Services for People with Multiple Sclerosis in Europe by the European Multiple Sclerosis Platform and RIMS, Rehabilitation in Multiple
Sclerosis (Battaglia et al, 2004).
These recommendations are the
result of an intensive collaboration among foremost experts in Multiple
Sclerosis Rehabilitation in Europe; their target is to contribute to ensuring
Europeans with MS have access to the best possible rehabilitation services at
every stage of their illness.
Therapies Consensus Paper based on the German MS Society’s report “Mehr
Lebensqualität, Sympomatische Therapie bei MS”. (Henze et al, 2006).
there is a vast amount of scientific literature dealing with symptomatic
treatment, high quality studies are still scarce. The MSTCG from Austria, Germany and Switzerland developed and published consensus guidelines based on the available
evidence from clinical studies and on expert opinions collected and critically
edited by a group of MS neurologists. The Consensus paper includes treatment
guidelines for some of the most important MS symptoms such as motor function
and coordination, cranial nerves, autonomic nervous system function e.g
bladder, bowel and sexual dysfunction, psychiatric and psychological problems,
and pan and paroxysmal symptoms.
Paper Palliative care among people severely affected with multiple sclerosis ( Haffenden et al, 2006).
This position paper based on recent
studies underlines the need for patients severely affected by MS in Europe to have access to palliative care assessments and services.
Institute for Clinical Excellence Guideline on MS Services (UK)
The National Institute for Clinical
Excellence Guideline on the management of MS provides clear, evidence-based
recommendations on managing all aspects of MS and offers a blueprint for
service providers and commissioners on the best way to organise complex
to promote the quality of life of people with MS (Trisolini et al, 2002)
These 10 principles were designed
to guide the development and evaluation of services that are provided by
governments, for profit or no-profit health and social services providers,
employers and other organizations for people with MS.
UN Convention on
the rights of People with Disabilities
There are number of references in the UN Convention on the
Rights of Disabled People, which support and reinforce the European Code of
Good Practice on the rights and quality of life of people affected by MS. The
UN Convention, once ratified, is legally binding and relates to disabled people
in general. The Code is not legally binding but is very specific towards the
rights and quality of life of people affected by MS, drawing on key policy
developments and consensus papers in the field. In this respect, it is clear
that these instruments are highly complementary.
the role of organizations International, European and National Level
There are active MS societies in all 27 member states of
the EU; together with other societies from the wider part of Europe they
constitute the European Multiple Sclerosis Platform (EMSP). EMSP is represented
within the European Medical Agency (EMEA), the European Commission’s Health
Policy Forum, and is also part of the European Patients’ Forum and the European
Disability Forum. Its parent body at international level, the Multiple
Sclerosis International Federation (MSIF) has consultative status within the
There is much work to be carried out in order to achieve
full and equal participation of people with MS in society. Advances in medical
research, the creation of appropriately flexible labour and social policies for
people with MS and the creation of an economic environment in which the cost of
the disease of MS on the individual and society are some of the issues on which
national MS societies campaign tenaciously.
At the MS-ID conference hosted by EMSP in May 2007, it was
conveyed that developments are coming on-stream, and have multifaceted
implications for the management of the disease. There is no cure for MS, but
medicines may slow it down and help control symptoms.
As a way forward in addressing the future, the needs and
voices of people with MS must be formally sought. Consultative status for
patients on issues such as pricing and reimbursement matters. The
professionalisation of the patient’s status (i.e. the strengthening of MS
society foothold in the national framework for effecting political change) is
bringing with it enhanced possibilities for empowerment and self-advocacy. But
emphasis must be placed on harmonising the status and advocacy role of national
MS societies in contributing to social policy changes.
The EMSP has recently embarked upon a three year project
entitled MS-ID (Multiple Sclerosis – Information Dividend) which seeks to
enhance equity of treatment, access thereto and quality of services for EU
citizens affected by Multiple Sclerosis (MS). It will create a standardised
data collection and management system of different national care approaches to
MS, which will allow good practice sharing between the EU Member States. The
project will contrast and compare current EU member states’ national care
approaches towards the diagnosis, treatment and management of MS. More
specifically, the project partners will exchange information on: the creation
of a defined strategy to analyse and compare MS data; prevalence and
epidemiology of multiple sclerosis in Europe; good practice review of MS
treatments and therapies, reviewing the social support and benefits of best
management of MS. The project will also analyse existing national studies on
the economics of (i.e. the cost of illness of) MS.
This project will contribute significantly to the
knowledge database available on MS, with the long-term added value of producing
annual national reports on the status of MS using the Open Method of
Coordination. The results of the project will come on-line during 2008 and
2009, with announcement thereon at a major public meeting in May 2009.
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