5.5.3. OTHER DISEASES
Acronyms
5.5.3.1. Eating
Disorders
5.5.3.1.1. Introduction
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).
5.5.3.1.2.
Data sources
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
and incidence.
Literature reviews
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.
Quantitative measurement
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,
in press).
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 5.5.3.1.2.1 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.
Table
5.5.3.1.1 Overview of data availability in Europe
Table 5.5.3.1.2.1: 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,
2007).
5.5.3.1.3. Data description
and analysis
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
group (i.e.,
20–24-year-old females) shows an incidence rate of 81,1 per 100.000 (Hoek and van
Hoeken, 2003).
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,
2004).
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
persons recovered.
5.5.3.1.4. 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
risk
factors as
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
bulimic (NEDA,
2004):
·
Psychological
factors:
low
self-esteem, feelings of inadequacy or lack of control in life, depression, anxiety,
anger, or loneliness;
·
Interpersonal
factors:
trouble
with family and personal relationships, difficulty in expressing emotions and
feelings, being teased or ridiculed, physical or sexual abuse;
·
Social
Factors:
cultural
pressure that glorify “thinness” and the “perfect body”; and
·
Biological
factors:
chemicals
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.
5.5.3.1.5. 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
(WHO, 2005):
·
provide
accurate and reliable information;
·
policy
without implementation is meaningless;
·
involve
children in designing and implementing programmes and policies;
·
develop
clear and ambiguous policy goals and programme objectives;
·
integrate
educational approach in a wide set of initiatives using full set of policy
instruments available to decision-makers;
·
imply
important health sector, coordinate work across ministries; and
·
take
into account culture, attitudes and beliefs of children;
5.5.3.1.6. 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.
5.5.3.1.7. References
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
Anorexia Nervosa and Related Eating Disorders Inc. (2005): Eating
disorders prevention: parents are key players [http://www.anred.com/prev.html]
(article online, accessed on 19 March 2008).
Austrian Council Presidency (2008): Showcases Healthy lifestyle in
Europe by nutrition in 13-16 years adolescents across Europe. Available at: 
http://cordis.europa.eu/austria/showcases11_en.html (article online,
accessed on 19 March 2008).
Berkman, N. D.; Lohr, K. N.; Bulik, C. M. (2007): Outcomes of Eating
Disorders: A Systematic review of the Literature. International Journal of Eating
Disorders
40:4 293-309.
De Henauw S , Gottrand F , De Bourdeaudhuij I,
Gonzalez-Gross M, Leclercq C, Kafatos A, Molnar D, Marcos A, Castillo M,
Dallongeville J, Gilbert CC, Bergman P, Widhalm K, Manios Y, Breidenasse C,
Kersting M, Moreno LA, on behalf of the HELENA Study Group (2007): Nutritional
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15:187–197.
Available at: http://www.springerlink.com/content/u1707h13166u0h9w/fulltext.pdf (article online,
accessed on 19 March 2008).
Gupta M A (1995): Concerns About Aging and a Drive for Thinness: A
Factor in the biospychosocial Model of Eating Disorders?. International Journal of
Eating Disorders, Vol. 18, No. 4, 351-357.
Harper K, Sperry S, Thompson JK (2008): Viewership of Pro-Eating
Disorder Websites: Association with Body Image and Eating Disturbance. International Journal of
Eating Disorder
41:1 92-95.
Hoek H W, van Hoeken D, (2003): Review of the Prevalence and Incidence
of Eating Disorders. Published online in Wiley InterScience DOI: 10.1002/eat.1022.
Levey R (2006): Anorexia Nervosa. eMedicine. Available at: [http://www.emedicine.com/med/topic144.htm] (article online,
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Luce KH, Crowther JH, Pole M, (2008): Eating Disorder Examination
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Misra M, Aggarwal A Miller, K.K, Almazan, C, Worley, M,. Soyka, L.A,
Herzog, D.B, Klibanski, A. (2004): Effects of Anorexia Nervosa on Clinical,
Hematologic, Biochemical, and Bone Density Parameters in Community-Dwelling
Adolescent Girls. PEDIATRICS Vol. 114 No. 6, 1574-1583.
NEDA (National
Eating Disorders Association) (2004): What Causes Eating Disorders? Available
at: http://www.nationaleatingdisorders.org/nedaDir/files/documents/handouts/WhatCaus.pdf (article online,
accessed on 19 March 2008).
National Centre for Eating Disorders (2008). Available at: http://www.eating-disorders.org.uk/ (article online,
accessed on 14 February 2008).
The Cleveland Clinic Foundation (2003a): DSMR-IV classification.
Anorexia. Available at: http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/psychiatry/eating/table1.htm (article online, accessed
on 12 March 2007).
The Cleveland Clinic Foundation (2003b): DSMR-IV classification. Bulimia.
Available at: http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/psychiatry/eating/table2.htm (article online,
accessed on 12 March 2007).
World Health Organization (WHO) (2003): Eating disorders. National Library for
Health Mental Health Specialist Library [http://www.library.nhs.uk/SpecialistLibrarySearch/Download.aspx?resID=79106] (article online,
accessed on 19 March 2008).
World Health Organization (2004): Health Policy for Children and
Adolescents, No. 4; Young people’s health in context. Health Behaviour in
School-aged Children (HBSC) study: international report from the 2001/2002
survey, chapter 3, 110-129. WHO Library Cataloguing in Publication Date. Currie CR, Morgan A,
Smith R, Settertobulte W, Samdal O, Barnekow Rasmussen V, eds. Available at: http://www.hbsc.org/downloads/IntReport04/Part4&5.pdf (article online, accessed
on 19 March 2008).
World Health Organization (WHO) (2005): The European Health Report
2005 – Part 3 Child an adolescent health and development. WHO Library
Cataloguing-in-Publication Data. WHO Regional Office for Europe.
5.5.3.1.8 Acronyms
5.5.3.2.
Schizophrenia and disorders of the schizophrenia
spectrum
5.5.3.2.1. Introduction
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
F21-F29.
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
the workplace.
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
(WHO, 2005b)
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).
5.5.3.2.2. 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
care systems.
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
care.
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
(IMS 2003).
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
literature.
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.
5.5.3.2.3. 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 5.5.3.2.1. 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
addressed.
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.
Mortality
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
(Saha, 2007).
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.
Hospital-Morbidity
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 5.5.3.3.2 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 5.5.3.2.2. Inter-country comparison
of hospital age standardized in-patient admission rates per 1000; Main diagnosis:
Schizophrenia ICD-10 codes: F20.
Figure 5.5.3.2.3. Admission rates trend
over time
The trend over
time of admission rates reflects the tendency of deinstitutionalization,
although in some countries the rate still remains high.
Figure 5.5.3.2.4. 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 5.5.3.3.2), 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 5.5.3.2.1. 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.
Co-morbidity
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).
Available
statistics do not cover this important aspect of morbidity.
Table 5.5.3.2.2. Prevalence and adjusted odds
ratios for main medical conditions in women and men with schizophrenia compared
to controls.
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,
2005).
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
underestimated.
Evidence based treatment of schizophrenia and treatment
gaps.
Treatment options
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
interventions.
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
measures.
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
syndromes
and prevention
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,
2004).
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
compliance.
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 5.5.3.3.5).
Figure 5.5.3.2.5: 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 5.5.3.2.3).
Table 5.5.3.2.3. Psychosocial
interventions reflected in European guidelines
Non-compliance
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
implementation
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 5.5.3.2.4.
Table 5.5.3.2.4. 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 5.5.3.2.5. Mental health service
in Europe
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
schizophrenia.
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
disorders.
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
5.5.3.3.6). 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 5.5.3.2.6. Experiences of stigma
in Italy
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
unpredictable.
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 5.5.3.3.6). Since
psychotic disorders account for the highest amount of direct costs, as
evaluated by Andlin-Sobocki (Figure 5.5.3.3.7), 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 5.5.3.2.6. Expenditures by kind of
health care service for year 2002 and 2004 with respect to F20-F29
Figure 5.5.3.2.7. Direct healthcare costs
by brain disorder
The most comprehensive evaluation of costs for brain disorders was
performed by the European Brain Council (Figure 5.5.3.3.8). 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 5.5.3.2.8. 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
rehabilitative measures.
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
rehabilitation.
5.5.3.2.4. Control tools
and policies
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
below:
·
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
www.euro.who.int/document/e76230.pdf
·
Mental health: facing the challenges, building solutions. Report from the WHO
European Ministerial Conference 2005
www.euro.who.int/document/E87301.pdf
·
Mental
health promotion and mental disorder prevention across
·
European
Member States: a collection of country stories (European Commission, 2006a)
·
Mental
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).
Database
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.
Guidelines
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).
Fighting stigma
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)
Prevention
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.
5.5.3.2.5. Future
developments
With regards to the enormous social burden it is indispensable
·
to
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;
·
to
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;
·
to
accelerate knowledge transfer from research into practice;
·
to
enhance implementation of evidence based guidelines
·
to
promote early detection and early intervention in order to reduce chronic cases
and financial burden;
·
to
reduce the stigma associated with schizophrenia;
·
to
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:
·
continue
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;
·
ensure
the delivery of state-of-the-art treatment in all medical settings;
·
train
psychiatrists in prevention, recognition and management of co-morbidities, and
overcome barriers towards optimal treatment;
·
overcome
stigma;
·
ensure
the adequate supply of all necessary mental health services and providers;
·
facilitate
re-entry into the working environment and social life in general, as major
factors of quality of life.
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5.5.3.2.7. Acronyms
5.5.3.3. Autism
Spectrum Disorder
5.5.3.3.1. Introduction
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
problems.
·
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.
5.5.3.3.2. 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
inconsistent.
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).
5.5.3.3.3. Data description
and analysis
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
