New international survey reveals devastating human cost of skin disorder suffered by millions - More than a quarter of patients with atopic eczema have been bullied or teased because of their skin condition, and many adult patients have suffered discrimination at work and found their careers hampered by the disease, according to the results of a new international study1 released today at the European Academy of Dermatology and Venereology congress in Florence, Italy.

The survey called ISOLATE (International Study Of Life with ATopic Eczema) - the largest and most comprehensive study of its kind ever conducted - reveals for the first time the extent of the emotional suffering caused by atopic eczema. Of the millions of patients around the world, 2,000 people from eight countries (France, Germany, Spain, Mexico, the Netherlands, Poland, UK and US) with moderate to severe atopic eczema were interviewed for the study, which was supported by patient associations and physicians in the countries involved.

Groups involved with the study are the National Eczema Society (UK), National Eczema Association for Science and Education (USA), Vereniging voor Mensen met Constitutioneel Eczeem (Netherlands), Deutscher Neurodermitis Bund (Germany), Asociaci�n de Familiares y Pacientes de Dermatitis At�pica (Spain), and Stowarzyszenie Pomocy Chorym na Astm� i Choroby Alergiczne (Poland). The study was supported by an unrestricted educational grant from Novartis, reflecting the company's commitment to research which will benefit patients in the field of dermatology.

Atopic eczema is a chronic, persistent allergic disease which makes the skin red, dry and itchy. Scratching leads to broken, oozing and bleeding skin. Apart from the intense physical discomfort, patients are often acutely aware of the appearance of their skin, which may become inflamed, flaking and blotchy when the disease periodically flares up.

Bullying and discrimination

One effect of these highly visible symptoms is that no less than 27% of patients have been bullied or teased because of their eczema, while around 10% of adult patients believe theyISOLATE Media Information have suffered discrimination at work including being stared at, not being accepted or having comments made behind their back, with many outsiders wrongly assuming that the condition is contagious. Furthermore, one in seven adult patients believe their career progression has been hindered by eczema, with the disease affecting job interviews and restricting their choice of careers. Bearing in mind the widespread prevalence of the disease, this equates to more than 115,000 people in a country such as France, over 170,000 in Germany and nearly 300,000 in the UK.

Commenting on the study results, Margaret Cox, Chief Executive of the UK's National Eczema Society, said: "Eczema is sometimes dismissed as a minor irritation, but this survey clearly demonstrates the suffering experienced by millions of people in all aspects of their everyday lives. It is hard to appreciate the misery that eczema can cause unless you, or a member of your family, have the disease. Even doctors may not fully appreciate the psychological and emotional burden faced by patients who have to live with this distressing condition."

Reflecting the desperation felt by many patients, the survey found that no less than 75% of those interviewed said that being able to control their eczema effectively would be the single most important improvement to their quality of life.

Isolation from the outside world

The survey shows that atopic eczema can also have a serious impact on patients' relationships, with many reporting that eczema prevents them from making friends and 20% of teenagers and adults believing the disease has made it harder for them to find a partner. Once again, this figure equate to hundreds of thousands of individuals in many countries.

Even in established relationships many couples have problems caused by eczema, with 43% of adult patients feeling awkward about a partner touching or seeing their body when their symptoms flare up. A similar number of patients are concerned about being seen in public during a flare-up.

The survey included focus group discussions with patients, one of whom described the way his life had been blighted by eczema: "It prevented me from getting married, because it was on my body, face, my scalp. I always feared that if I got married and had children they would have those genes as well, so I thought rather than making several people unhappy it was better to be unhappy on my own."

The psychological burden

More than half of those in the survey described the often unrecognised psychological burden of eczema, including frequent bouts of depression. In addition many suffered from loss of self-confidence when their symptoms flared up. Anger, frustration and embarrassment were listed as common feelings among respondents. The survey showed that according to patients, their physicians are largely ignoring the emotional impact of eczema, with only 26% of doctors discussing this aspect of the disease with their patients.

Other caregivers described the trauma of seeing their children's symptoms and being unable to help. One parent said: "It causes a lot of sorrow, as my son's eczema is so severe now that it leaves scars, and those scars will never go."

Even when free from symptoms, more than half of patients and carers worry about the next time their disease will flare up. In the words of one patient: "Even if you don't flare up, you are nervous and you panic because you know it's going to happen again, you just don't know when... It's really an emotional thing."

Underperformance at work and school

During a flare-up, when the physical symptoms are at their most unbearable, patients estimate that on average they under-perform for 10% of the time they are at work or school. As moderate patients spend more than three months of each year in 'flare' and severe patients more than five months, the impact is considerable.

In a typical year, patients miss an average of three days at work or school due to eczema. Sleep is affected for an average of seven nights during every flare, leaving patients tired and irritable. Given that even patients with moderate disease experience at least seven flares a year, this equates to 49 sleep-affected nights each year.

The need for long-term control of eczema

The survey also examines patients' concerns about their current medication and their desire for a safe and effective therapy that can be used long-term to prevent the progression of sudden flares-ups. Results show that 58% of patients restrict their use of topical steroids because of their concern about side effects such as skin-thinning, and 66% use them only as a last resort.

A significant majority of those who took part in the study identified the need for an effective treatment that would give them long-term control of their eczema and a much-needed improvement to their quality of life.

Prof Jan Simon, Professor and Chairman, Department of Dermatology, Venereology and Allergology of the University Medical Center Leipzig, Germany, who presented the results at EADV, said: "This study has revealed for the first time the true extent of the suffering caused by atopic eczema, not just physically but also at a deeper emotional level due to the isolation and withdrawal that it imposes on many patients.

"In general, doctors and other healthcare professionals must recognise that they are not doing enough to address the psychological challenges faced by their patients as a result of this disease. We should also be aware that controlling atopic eczema more effectively in the long-term using newer treatment options can make a radical improvement to patients' quality of life."

Notes to editors:

� Results from the study were reported at the congress of the European Academy of Dermatology and Venereology in Florence, Italy, on 18 November 2004.

� The survey was conducted by the leading independent market research company NOP World Health, and supported by an unrestricted educational grant from Novartis. Interviews took place between July and September 2004.

� 60% were patients and 40% were caregivers of children aged two and above.

� Patients interviewed were classified by their physicians as being moderate (i.e. flares occur more than seven times a year on average, typically on three to four parts of the body, with each flare lasting more than 16 days) or severe (i.e. flares occur more than nine times a year on average, typically on three to four parts of the body, and last for more than 19 days).

� The total number of patients with atopic eczema in each of the countries surveyed are calculated as follows: France 2.3 million,2 Germany 2.3m,2 Mexico 4.9m,3 Netherlands 0.4m,4 Poland 0.8m,5 Spain 2.5m,6 UK 4.8m,5 US 17.4m.5 The survey included patients with moderate and severe disease, who make up around 60% of these totals.

For further information on the ISOLATE study, please contact Porter Novelli public relations:

Anne Ferguson Claire Martin
Direct tel: +44 (0)20 7853 2285 Direct tel: +44 (0)20 7853 2237
Fax: +44 (0)20 7853 2244 Fax: +44 (0)20 7853 2244
Mobile: +44 (0)7720 277161 Mobile: +44 (0)7900 886579

1. International Study Of Life with ATopic Eczema. Data on file.
2. Mattson Jacks Epidemiology Database
3. Estimate based on Lopez-Perez, G. et al, Prevalence of Atopic Dermatitis in a Group of Children in Mexico City, Journal of World Allergy Org, Nov 2001, 13(6)
4. Verboom P, Hakkaart-Van Roijen et al. Br J Dermatol. 2002 Oct;147(4):716-24
5. Data on file
6. International Study of Asthma and Allergies in Childhood (ISAAC) Steering Committee. Worldwide variation in prevalence of symptoms of asthma, allergic