ARTICLE
Auteur(s) : H. Williams, A. Svensson, Th. Diepgen, L.
Naldi, P.J. Coenraads, P. Elsner, J.-J. Grob, J.N. Bouwes Bavinck
on behalf of The European Dermato-Epidemiology Network (EDEN)
Epidemiology of skin diseases in Europe
Introduction
What is epidemiology?
Epidemiology refers to the study of the distribution and causes of
diseases in human populations [9, 23]. Epidemiology as applied to
dermatology is thus concerned with finding out more about issues
such as how many people suffer from skin disease in a given
community such as the European Community, and the different ways
that such skin diseases affect people in terms of adverse quality
of life and loss of employment. More importantly, by contrasting
affected people against those without disease with respect to a
range of plausible causes, epidemiology offers one of the simplest
and most direct ways of evaluating the causes of skin diseases in
populations. Knowledge of causes then opens up the possibility for
prevention of skin and venereal diseases – a potentially powerful
and perhaps more appropriate way of approaching the problem of skin
disease at a population level than investment into expensive drugs,
which may often only modify established disease.
Clinical epidemiology and health services research is also
concerned with evaluating the efficacy and cost-effectiveness of
treatments for skin disease, whether these be new drugs,
ultraviolet light devices, herbal remedies or different ways of
organising dermatological services. Whereas most clinical research
is involved in describing individual cases, epidemiology is
concerned with studying individuals with a particular skin disease
in relation to entire populations, so that effective health care
strategies that benefit all can be developed.
This short report summarises some important epidemiological
aspects of skin diseases in Europe, and ends by highlighting
important future health service and population research issues.
EDEN and the opportunities for studying skin disease in
Europe
Recent progress
Although progress in understanding the epidemiology of skin
diseases within Europe has been slow in the past due to a
preoccupation with research directed at determining disease
mechanisms at a cellular level, the last years have witnessed a
modest but encouraging growth in epidemiological research. This is
due in part to organisations such as the European
Dermato-Epidemiology Network (EDEN) – an independent non-profit
organisation of volunteers whose aim is to promote the highest
standards of education and research into the causes and
distribution of skin diseases within Europe.
EDEN was founded in 1995 in order to stimulate co-operation and
high standards of research in epidemiology as applied to
dermatology. EDEN is organised through a pan-European steering
committee. In addition to its own collaborative research projects,
EDEN has been successful in running teaching courses and sharing
expertise at all major European dermatological meetings, as well as
organising its own Congress in collaboration with the International
Dermato-Epidemiology Association (IDEA) every three years. EDEN has
helped to facilitate networking of like-minded researchers, and has
initiated its own collaborative research projects such as the EDEN
psoriasis project – a methodological review of all clinical trials
of psoriasis over the last 20 years [15]. The aim of such a
detailed review is to provide guidance on appropriate future study
designs and to encourage better standards of clinical trial
reporting in journals. A similar review of trials of interventions
for treatment of hand eczema – a common occupational disease of
major economic importance, has also been completed [20]. A further
EDEN project critically reviewed prevalence surveys of common skin
diseases such as psoriasis throughout Europe [16]
The opportunities for studying skin disease in a changing Europe
Europe provides a unique “natural experiment” of different ethnic
groups, different geophysical conditions such as climate, sunlight
and terrain, different socio-economic conditions and varying
environmental factors such as industrial pollution and airborne
allergens in which to explore the possible causes of skin diseases.
The varying methods of dermatological health care delivery within
the many countries of Europe also provide a unique opportunity to
evaluate the appropriateness and effectiveness of such systems in
the light of population-based epidemiological data and high quality
evidence of efficacy.
How common is skin disease in Europe?
At least one quarter of individuals have a skin disease at any one
time To date, no comprehensive surveys of the prevalence of skin
diseases as a whole have been conducted across Europe. Indeed,
apart from specific diseases such as childhood eczema and melanoma
skin cancer, none have been conducted in more than one country.
Surveys in individual countries suggest that skin conditions as a
whole represent a large and important problem [4, 10, 17]. Thus,
one survey of adults in London suggested that 22.5% had a skin
disease that could benefit from medical care, yet only 24% of such
individuals with moderate to severe skin disease had made use of
medical services in the last 6 months [17]. These surveys, along
with a trend to increasing consultation rates for skin disease as a
whole, suggest that there is a large hidden iceberg of unmet
dermatological need within Europe. This iceberg is likely to
surface over the next 20 years as consumers of health care become
more aware of their rights, and because some common skin diseases
such as skin cancer and venous leg ulcers are becoming more common
due to an increasingly ageing population [22]. Frequent travel
between countries and abroad, migrant people in search of work, and
widening socio-economic divides are also factors that could
contribute to increases in infectious skin and venereal diseases.
Some estimates of the occurrence of common skin diseases (excluding
skin cancer) are given in table 1( Table
1 ).
Inflammatory skin diseases
Surveys of specific skin diseases such as childhood eczema (atopic
dermatitis) suggest that like asthma and hay fever, it is a major
problem within Europe, affecting around 10% of children overall.
Highest rates (around 20%) are observed in Scandinavia and UK and
the lowest rates of around 5% are found in Southeastern Europe.
Reasons for this North-West/South-East gradient are unclear.
Irritant and allergic contact dermatitis are also a serious problem
affecting around 10% of adults. Hand eczema represents one of the
four commonest occupationally-related diseases, accounting for
substantial lost earning potential in young otherwise healthy
populations.
Various European population based studies have suggested that
psoriasis - a disease that can have a profound effect on quality of
life of individuals – affects around 2% of the population, with two
peaks of onset in early adulthood and in later life. Acne is so
common as to be almost universal during teenage years, yet surveys
have suggested that few affected individuals receive good medical
advice regarding the most appropriate treatment that can prevent
lifelong facial scarring.
Table 1 Estimates of the frequencies of common skin
diseases (excluding skin cancer)
|
Disease
|
Study population
|
Prevalence
|
Reference
|
|
Atopic dermatitis
|
Swedish birth cohort
|
Point prevalence at 2 years of age = 7%
|
[2]
|
|
Swedish school children (5-6 yrs.)
|
Lifetime prevalence = 20.7% Point prevalences: in Gotenborg = 8.5%,
in Kristianstad = 11.5%
|
[3]
|
|
Italian school children (9 yrs.)
|
Lifetime prevalence = 15.2% Point prevalence = 5.8%
|
[8]
|
|
Danish school children (12-16 yrs.)
|
Lifetime prevalence = 21.3% 1-year prevalence = 6.7% Point
prevalence = 3.6%
|
[14]
|
|
Contact sensitisation
|
German adults (population-based, nested case-control study)
|
Prevalence = 40% (any contact sensitisation)
|
[19]
|
|
Danish school children (12-16 years)
|
Prevalence = 15%
|
[14]
|
|
Hand eczema
|
Swedish adults (large questionnaire survey)
|
Prevalence = 8% (including mild cases)
|
[13]
|
|
Swedish school children (16-19 yrs.)
|
Point prevalence = 4%, 1-year prevalence = 10%
|
[25]
|
|
Danish school children aged 12-16 years:
|
Point prevalence = 3%, 1-year prevalence = 9%
|
[14]
|
|
Occupational contact dermatitis (OCD)
|
Review of registered OCD in different European countries
|
Incidence rate = 0.5 to 1.9 cases / 1000 full-time workers per year
(underestimated by 10 to 50 times)
|
[5]
|
|
Rosacea
|
Swedish office employees
|
Point prevalence = 10% (according to clinical examination)
|
[1]
|
|
Psoriasis
|
Summary of 18 population-based studies within Europe:
|
Point prevalence = 1.7%, Cumulative incidence = 2.1%
|
[16]
|
|
Leg ulcers
|
Swedish population (older than 70 years)
|
Prevalence = 12.6% (healed and non-healed chronic leg ulcers)
|
[12]
|
Infectious skin diseases
These may account for the bulk of skin diseases presenting to
primary care physicians. Infectious skin diseases may be bacterial
e.g. impetigo or boils, viral e.g. herpes simplex or warts, or
fungal e.g. athlete’s foot or ringworm. Ectoparasites also consume
a large burden of health care resources [7], especially when
treating epidemics of head lice in schoolchildren and scabies
outbreaks in nursing homes.
Chronic venous insufficiency and leg ulcers
Chronic venous insufficiency is a major although generally
underestimated health problem which affects approximately 15% of
the adult population in the European countries, with 1% suffering
from venous leg ulcers (e.g. 1 million persons in Germany). Venous
ulcers in their most severe form are a debilitating condition,
especially in the elderly. At present, management in terms of
available treatment facilities and secondary prevention is far from
adequate. Dermatology is the main medical specialty to take care of
people with chronic venous insufficiency in most parts of Europe.
Skin cancers
Melanoma and non-melanoma (basal and squamous cell carcinoma) skin
cancer (NMSC) are now the most common type of cancer in White
populations and the incidence of skin cancer has reached epidemic
proportions [6]. According to recent population-based studies from
Australia, the incidence rate is over 2% for basal cell carcinoma
(BCC) in males, 1% for squamous cell carcinoma (SCC) and over 50
new cases of melanoma per 100,000. Many cancer registries probably
underestimate the true incidence, especially of NMSC (table 2(
Table 2 )). Both basal cell carcinoma
and squamous cell cancer are cured by adequate surgical removal.
The capacity of many current health care systems to cope with such
surgical demand is currently stretched to maximum in some European
countries due to the increasing incidence of NMSC.
Melanoma is the most serious form of skin cancer, and its
incidence has been rising steeply in the white population over the
last 30 years (doubling of cases every 10-15 years), probably due
in part to increased leisure exposure to the sun. Melanoma is
preventable at least to some degree, yet approaches to educate the
public on the dangers of sunbathing have been variable, ranging
from non-existent in some European countries to highly proactive
educational campaigns aimed at primary prevention (preventing the
development of skin cancer in the first place) and secondary
prevention (catching established disease early) in others. Melanoma
also has the advantage of being curable when recognised at an early
stage, yet facilities for detecting such early cases vary widely
within relatively short distances in Europe.
Table 2 Age-standardized rates of non-melanoma skin
cancer (NMSC) in whites per 100,000 population from Australia,
United States and Europe (selected studies after 1990, according to
Diepgen & Mahler 2002)
|
Country
|
Year of report
|
Basal cell carcinoma
|
Squamous cell carcinoma
|
|
Male
|
Female
|
Male
|
Female
|
|
Australia
|
|
|
|
|
|
|
- Townsville
|
1998
|
2055
|
1195
|
1332
|
755
|
|
- Nambour
|
1996
|
2074
|
1579
|
1035
|
472
|
|
- Tasmania
|
1993
|
145
|
83
|
64
|
20
|
|
United States
|
|
|
|
|
|
|
- different
|
1994
|
407
|
212
|
81
|
26
|
|
- New Hampshire
|
1991
|
159
|
87
|
32
|
8
|
|
- Rochester
|
1997
|
175
|
124
|
155
|
71
|
|
Europe
|
|
|
|
|
|
|
- Wales, UK
|
2000
|
128
|
105
|
25
|
9
|
|
- Hull, UK
|
1994
|
116
|
103
|
29
|
21
|
|
- Scotland
|
1998
|
50
|
37
|
18
|
8
|
|
- Finland
|
1999
|
49
|
45
|
7
|
4
|
|
- The Netherlands
|
1991
|
46
|
32
|
11
|
3
|
Rarer skin diseases
Whilst it is true that less than 10 skin disease groups probably
account for 70% of dermatological consultations, at least 1000 skin
diseases have been recognised [22]. It is quite easy therefore to
forget the importance of rarer skin diseases such as epidermolysis
bullosa (a genetic form of mechanical blistering which can result
in severe scarring and deformity), vitiligo (a patchy and
disfiguring complete loss of pigment in the skin), and severe
autoimmune blistering disorders such as pemphigus (resulting in
large areas of eroded skin and increased morbidity) when referring
to skin disease only from a public health perspective. The study of
such rare skin diseases is an area which lends itself very well to
a Europe-wide approach in order to have sufficient numbers of
patients to conduct reliable studies e.g., the mapping of molecular
defects underlying genetic skin diseases may greatly profit from
such joint European enterprises.
How does skin disease affect people?
Disability due to loss of function
Public sympathy and charity for people with skin disease is
limited. This is surprising considering skin disease is so common
and that it can affect people in so many ways. Thus scleroderma,
both systemic and localised, directly restricts mobility and
functioning of the limbs, and leg ulcers produce chronic pain and
limit the ability to walk. Some inflammatory skin diseases such as
occupational hand dermatitis or hand psoriasis confer a direct
disability by affecting the ability to use one’s hands. Atopic
eczema and scabies are intensely itchy disorders, leading to sleep
loss for sufferers and their families and lack of concentration due
to drowsiness the following day.
Mortality
Chronic suffering rather than mortality is characteristic for most
skin diseases. Nevertheless, there are exceptions, e.g. once
melanoma has spread beyond the regional lymph nodes or into the
bloodstream, the outlook is very poor. Melanoma kills a
disproportionate number of young economically active people when
compared with other cancers (melanoma comprises 1-2% of all
cancer-related fatalities). Several other less common skin cancers
such as Merkel cell tumours, malignant fibrous histiocytomas,
mycosis fungoides, other lymphomas, angiosarcomas, and Kaposi
sarcoma are similarly aggressive or particularly difficult to
treat. A wide range of multisystem dermatological diseases are
associated with reduced life expectancy: collagen vascular
diseases, acquired blistering diseases, and genetic diseases such
as xeroderma pigmentosum, epidermolysis bullosa and many others.
Rare skin diseases such as blistering drug reactions can result in
a person losing almost their entire skin - as in a severe burn. In
the absence of a correctly functioning skin, temperature
regulation, salt and water balance and defense against infections
are grossly impaired. These types of skin conditions are associated
with a mortality of around 30%.
Profound psychological effects
In addition to physical symptoms, perhaps the most significant way
in which skin disease affects people is the effect it has on that
person’s psychological well-being [18]. Disfiguring skin disease on
visible sites such as the face (e.g. acne) can result in loss of
self-esteem, depression and poorer job prospects. Indeed, quality
of life scores for people with skin disease are often worse than
people with more traditional “medical” disorders such as angina and
hypertension. The skin is therefore a sensitive and dynamic organ
that has a crucial and frequently underestimated social function.
High economic costs
Although it is true that skin disease is rarely life threatening,
it is the product of its moderate morbidity times its high
prevalence that places skin disease among the top four chronic
disease problems when entire communities are considered. Various
studies have assessed the economic impact of specific skin diseases
and these have shown that direct costs are as high as for many
other diseases, with much of that cost being borne by patients as
well as society. Small changes in the way this balance functions
can have a profound effect on a country’s health care budget
because skin disease affects so many people [21, 22].
Other costs such as unemployment and losing an economically
viable sector of a country’s workforce are also important when
considered at a population level. Indirect costs e.g. the adverse
effects on quality of life and the opportunity costs due to loss of
time spent for daily topical therapy and skin care in many skin
diseases also need to be considered in such economic
evaluations.
What are the causes of skin diseases in Europe?
Ultraviolet light
Due to lack of investment into researching the epidemiology of skin
diseases, knowledge of the factors that predispose or precipitate
various skin diseases is still patchy and at an early stage. Much
epidemiological work in dermatology has evaluated the role of
excessive ultraviolet light exposure in the various form of skin
cancer. Whilst excessive sun is an important risk factor for skin
cancer, other factors such as being born with a fair skin, red
hair, having lots of moles and a family history of skin cancer are
also important.
Genetic-environmental interaction
The causes of childhood eczema are still not fully known, but
genetic predisposition along with various allergic (e.g. house dust
mite) and non-allergic factors such as irritation from rough
textiles and soap have been shown to be important. In some cases of
dermatitis, the specific allergen is known and can be tested for
e.g. nickel dermatitis or fragrance allergy. Once identified by
patch testing, such allergens can be avoided, eliminating the
problem.
Psoriasis is also partly genetically determined, although the
exact mode of inheritance is still unclear. Various European
studies have suggested that both smoking and excessive alcohol
consumption as well as dietary factors may be important risk
factors for contributing to disease expression. In addition,
several environmental triggering factors, e.g. infections and some
drugs, have been identified.
Occupational exposure
Occupational skin diseases may represent a major burden to some
industries [5]. Those that involve high exposure to irritant oils,
soaps and wet work such as metal workers in the motor industry,
hairdressers and nurses seem to get the worst problems. Other
occupations are associated with specific allergic reactions e.g.
those handling epoxy resin or cement workers exposed to chromate.
Such reactions may lead to lifelong sensitivity and permanent loss
from the workforce.
Other chemicals can lead to specific forms of skin disease such
as a severe form of acne (chloracne) from dioxin and an
inflammatory skin disease known as lichen planus, from colour film
developing chemicals.
Infectious agents
In some European countries, infectious skin diseases such as head
lice, scabies, impetigo, infected bites, boils, cellulitis, fungal
infections and venereal diseases such as gonorrhoea, syphilis and
non-specific urethritis still abound even though effective
treatments are readily available.
How can skin diseases be prevented in Europe?
Prevention of skin disease is still at a very early stage, even
though the knowledge to formulate some preventative strategies is
already available. Thus, measures aimed at changing the public’s
behaviour to avoid excessive sun exposure and to recognise the
visible signs of melanoma and seeking advice at an early stage
(especially those at high risk of disease) may have already had a
substantial impact on reducing the mortality of this devastating
disease. Other studies in Europe have suggested that at least one
third of children born to parents with allergic disease can be
prevented from developing atopic eczema through a range of measures
aimed at reducing allergic factors before or around birth [11].
Better labeling of cosmetic ingredients and working substances,
along with legislation to reduce harmful exposures, may play an
important part in reducing contact dermatitis. In Denmark for
instance, the introduction of legislation to reduce nickel contact
with the skin might have contributed to reducing nickel dermatitis,
which can affect up to 20% of young women. Infectious skin
diseases, such as outbreaks of fungal infections of the scalp, or
head lice, are all preventable to some degree.
How are skin diseases treated in Europe?
Variation in health services for people with skin diseases in
Europe
Perhaps one of the most striking anomalies of skin treatment within
Europe is the large variation in the provision of dermatological
services. Thus in one country such as the UK, where the National
Health Service relies on a comprehensive primary care system,
patients normally consult with their community general practitioner
and only the most severe or difficult cases are referred to a
hospital-based dermatologist. In other countries such as France and
Germany, access to private dermatologists is simple without
referral from a primary care practitioner.
Some countries, such as Romania and Germany, make heavy use of
inpatient services whereas other countries conduct most care in an
outpatient or day treatment setting. The density of dermatologists
also varies dramatically across Europe ranging from 1 per 150,000
of the population in the UK to 1 per 20,000 in Italy and France
[22]. The duration and type of training in order to become a
dermatologist also varies substantially, even between different EU
countries. These differences are due to the considerable
heterogeneity in the definition of dermatology as a specialty and
the range of tasks carried out by dermatologists across Europe – an
activity that is currently being surveyed by EDEN. In countries
such as Germany, The Netherlands and France, dermatologists may be
responsible and competent for multisystem dermatological diseases,
cancer chemotherapy, dermatosurgery, dermatopathology, allergology,
venereal diseases, chronic venous insufficiency and decubitus
ulcers, male infertility, as well as traditional dermatology,
whereas in the UK, a dermatologist might have a narrower range of
responsibilities.
The point of illustrating such variation is twofold. First, such
heterogeneity probably reflects historical working patterns that
have developed according to health care policies from previous
governments. Each country swears by its own system, and to be fair,
perhaps those systems currently in operation are the most
appropriate for that particular country. Until good health services
research examines the relative efficacy, cost-effectiveness,
acceptability and appropriateness of the various dermatological
systems operating within Europe, the debate on optimal
dermatological care for each particular country will continue.
Second, the variation of healthcare systems provides a wonderful
opportunity to compare the outcomes in these different systems,
although such comparative observational data will need to be
handled carefully in view of the differences in patient selection
and information provided by services in different countries.
How good is the evidence that skin treatments work?
Although it might appear obvious to a layman that dermatologists
only use treatments which are based on high quality randomised
controlled clinical trials, the truth is that many treatments in
current use lack such a clear evidential basis [24]. In the absence
of such evidence, it is understandable that dermatologists rely
heavily on anecdote and past experience, especially for rare skin
diseases. This should not detract from the task of conducting high
quality clinical trials where possible – perhaps on a pan-European
basis.
Systematic reviews i.e. summaries of the evidence for the
prevention and treatment of skin diseases that have been conducted
in an explicit and systematic way, are conducted by volunteers
contributing to the Cochrane Skin Group
(www.nottingham.ac.uk~muzd), which is based in Europe. The evidence
from systematic reviews on skin disease produced to date point to a
lack of useful and high quality data. In many cases, the main
trials have reflected the priorities of the pharmaceutical industry
as opposed to the sorts of questions generated by consumers of
services and their carers. EDEN has made a significant contribution
to the Cochrane Skin Group, and three members of the steering
committee serve as editors.
The future of research and service development
Stepping back from the traditional hospital perspective
Epidemiology is very much involved in stepping back and evaluating
the whole picture of skin disease from a population perspective.
What is clear from the brief glimpse into the epidemiology of skin
disease in Europe given in this section is that i) skin disease is
very common ii) some skin diseases such as skin cancer are becoming
more common and iii) that future demand for skin services is likely
to increase due to growing consumer awareness and society’s
attitudes to people with skin impairments [22]. It is evident that
skin disease can profoundly affect the quality of life for a
sufferer, and that the economic consequences of industrial skin
disease can also be high. Research into the causes of skin disease
using an epidemiological approach is still in its infancy, yet
already there are some pointers that some skin diseases can be
prevented to some degree.
Four major research priorities
There appear to be at least four major knowledge gaps in relation
to the epidemiology of skin disease in Europe:
The first is the complete absence of any comparative prevalence
surveys of skin disease in general involving more than one country.
Even though skin diseases have the advantage of being easily
visible, such population-based surveys are difficult and costly to
conduct. They nevertheless provide an essential foundation of data
on which to plan appropriate health services.
The second is to explore the evidence of effectiveness for the
various health care systems that currently operate within Europe.
Such an evaluation should begin with the users’ perspective in
mind, rather than possible protectionist motives by dermatologists.
Such studies could initially be observational studies based on data
already collected within current systems, which could then progress
to more elaborate controlled intervention studies.
The third priority is to invest in epidemiological research that
seeks to find out the causes of skin diseases which could, in turn,
lead to disease prevention.
The fourth is to develop more links between epidemiology and
laboratory research so that laboratory research priorities are more
guided by important clinical questions thrown up by epidemiological
and clinical research. As an example, epidemiological research
suggesting that there were at least two different types of
psoriasis can then be taken into account when undertaking genetic
and cellular studies.
Only when these types of questions are answered will it be
possible to have any sensible debate about which is best method for
dealing with the increasing consultation and costs of treating skin
diseases in Europe.
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Raftery J, eds. Health Care Needs Assessment, second series.
Oxford: Radcliffe Medical Press, 1997.
23 In: Williams HC, Strachan DP, eds. The Challenge of
Dermato-Epidemiology. Boca Raton: CRC Press Inc., 1997.
24 In: Williams HC, Bigby M, et al., eds.
Evidence-based Dermatology. London: BMJ Books, 2003.
25 Yngveson M, Svensson Å, et al. Prevalence of
self-reported hand dermatosis in upper secondary school pupils.
Acta Derm Venereol 1998; 78: 371-4.
Websites
26 European Dermato-Epidemiology Network (EDEN):
http://orgs.dermis.net/eden.
27 Cochrane Skin Group: http://www.nottingham.ac.uk/~muzd.
28 Evidence-Based Dermatology: www.evidbasedderm.com and
www.ebderm.org.
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