Interviews - Thomas Werfel


Germany

ABOUT YOUR OWN STRUCTURE :


  1. Puce First of all, do you have an individual and/or collective approach ?

We have a collective approach.


  1. Puce How many children have, up to today, integrated the patient education programme in your department ?

Around 200 patients per year.


  1. Puce Can you describe how an initial interview takes place ?

Well there is an initial interview with the in-patients of the clinic. In addition we invite the patients we don’t know for an interview and a physical examination in order to establish a diagnosis. The first question always is; is it really atopic dermatitis or something else? And then; how severe is it? We also try to build a good atmosphere with the patients.

Then, we perform training courses only for the parents for the 0-7 years age group. From 8 to 13 years the parents and the children are trained most of the time separately, but sometimes together. From 13 years upwards, the training course addresses mainly the adolescent patients. There is an optional lesson for the parents of teenagers but this is not mandatory. The actual course is for the patients.


  1. Puce Who conducts the interview (doctors, nurses, psychologists..) and where do they take place ?

There are three categories of staff. First, there is either a dermatologist or a pediatrician, but in our team it’s mostly a dermatologist. Then there is a trainer from the field of psychology or psychosomatics and the third member of the staff is a nutritionist. In our group we have a dietitian trained in food allergy and atopic dermatitis.

The courses take place in the hospital but, as our region is quite large, we have a second centre in the north where some of our trainers travel to give some courses.


  1. Puce How many members of staff participate in this programme and what training, if any, do they receive ?

There are the three groups as I mentioned above and the staff must take part in ‘train the trainer’ workshops. This consists of two weekend courses where they are also trained in the speciality of the other staff members. For example the dermatologist actively takes part in the psychology training, and the food allergy training etc and this goes for each member of the staff. In addition the staff must do two educational workshops a year under the supervision of an experienced person in this field. The entire team also meets on a regular basis to discuss how to deal with certain questions or problems.


  1. Puce What are the principal aims of these workshops ?

The first is to enable the patients to manage their disease in a better way, so we need to train them in how to manage the disease situation and also to increase their knowledge about trigger factors and the treatment.


  1. Puce Do you use educational support tools and if so can you describe them ?

We have structured tools that each trainer uses. We put them on overhead slides as we feel it is better than power-point. We even have some handouts for the patients but each trainer is free to use these tools or not. The tools also define the contents which have to be treated in the course. For example we use some photographs to explain SCORAD or what constitutes severe erythema etc.


  1. Puce Is there a follow-up ?

No, not really. We would like to have a structured follow-up but this has not yet been not organised.


  1. Puce How is the patient’s progress evaluated ?

During the phase of the German multi centre project called GADIS, all patients were evaluated by a structured follow-up interview up to one year. The major results of this have been published by Staab et al in the British Medical Journal (BMJ 2006). Recently a young researcher of our group performed additional structured interviews on the issue of food allergy with the patients after a few months, but this was just an individual project.


  1. Puce Do private dermatologists participate in the atopic school ?

Well we have trained quite a number of private dermatologists in our train the trainer courses so they have the certificate. There were two colleagues who tried to establish a training group in their own context but they stopped because it was quite a lot of work. In our group of trainers we recruit the dermatologists from the clinic.


  1. Puce How is the link established between the atopic school and the dermatologists and paediatricians in private practice ?

Well private dermatologists frequently get the information about our courses. Some of them support our initiative but I would say the majority are still rather indifferent to these courses. Maybe they are a little afraid that we inform their patients about treatments they personally do not like. A major current problem in Germany is that medical doctors come under some pressure from the insurance companies not to use expensive drugs or ointments so there is a theoretical risk that when a patient learns about more expensive treatments that they then ask for it.


  1. Puce How is your atopic school funded ?

Well, we belong to this initiative that culminated in the creation of the so called GADIS project. The German health authority commissioned us to establish a working group to develop a program to improve the treatment of atopic dermatitis. We were brought together with various groups and established the current program. So this is the program for children and adolescents. In addition there is now an initiative for adult patients from the German dermatological society and we are trying to progress in establishing similar structures for adult patients.


  1. Puce Do you have contact with other patient education teams, particularly those teams working with asthma or food allergies ?

Yes, we have a lot of contacts with the colleagues from the asthma training courses and in fact two psychologists from our team also belong to the asthma team in Hannover and two pediatricians are also involved in both the asthma and the atopic dermatitis project. We are just organising a national congress on patient education for next year. The pediatrician who is active both in the asthma and the atopic dermatitis schools and myself are going to chair this congress and we aim to bring together all initiatives in patient education including those for other disease groups such as rheumatic diseases or diabetes.


PATIENT EDUCATION IN YOUR COUNTRY :


  1. Puce What role, if any, do parent associations/patient support groups, play in the atopic schools ?

They are not really involved in this initiative even though we do have some good associations and the patients are informed of their existence. In Germany there are,, however, some associations that I would be slow in recommending because their point of view is not completely compatible with what we try to tell the patients. For example they may warn their members not to use corticoid steroids for example when we are trying to educate patients about the correct use of this treatment.


  1. Puce What role, if any, do schools play in managing chronic skin disease ?

None, but there is a group of doctors who perform educational sessions on medical topics for teachers in Hannover. This is a general initiative and not just for atopic dermatitis.


  1. Puce Do you have official patient education recommendations/guidelines in your country ?

We have this GADIS project and we even have a manual which defines the concept. The current national guideline on atopic dermatitis which will be published at the end of this year will include a recommendation in favour of atopic schools.


  1. Puce How much is the patient reimbursed by the health authorities ?

Well, for about 95% of the patients, the insurance companies pay everything. The local initiatives have to establish individual contracts with the insurance companies, which is, of course, quite a lot of work. We will probably finalise a first general contract with a large northern German insurance company, which will than enable all local initiatives to have their atopic schools reimbursed.


Thank you Prof Thomas Werfel.




Prof. Thomas Werfel


Klinik für Dermatologie und Venerologie Medizinische Hochschule Hannover Ricklinger Str. 5

Germany.