Interviews - Thomas Diepgen


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 today integrated the patient education programme in your department ?

Much more than a thousand. Maybe four or five thousand. You see our pilot study was based on a about a thousand patients.


  1. Puce How many participants are there in the collective workshops and who are they (children, parents, other adults…) ?

We normally have around six patients or six parents. Depending on the age group there are either parents or children. In the first age group, up to 6 years there are only parents. Between 6 and 13 years the parents accompany the children and then from 13 to 18 years it’s only the patients.


  1. Puce What severity is the disease of the patients attending the school ?

I would say mostly moderate. The SCORAD is about 40 points on average and we set a SCORAD of 20 as a minimum.


  1. Puce How many sessions do the patients follow and how do you evaluate their progression ?

There are 6 sessions of 2 hours each. During our study, the follow up was mandatory in order to evaluate our program, so we did a follow up at 6 months and after1 year, but now that this study is over we don’t do this anymore. I mean some of us do a follow up but it’s not mandatory.


  1. Puce Who are the educational staff for this programme (doctors, nurses, psychologists..) ?

The educational staff is an interdisciplinary staff. There are either dermatologists or paediatricians, a nurse and somebody who knows about food and things like that and finally a psychologist.


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

Well they have to complete a training course to be certified as an Atopic Dermatitis trainer. This is a ‘train the trainer’ course. You see normally we have these 6 times 2 hour sessions and the person in charge may vary but there is always a team of 2 to 3 staff members.


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

Yes, well the aims are to increase the knowledge of Atopic Dermatitis and the management of this disease. So for example it’s about realising when they have to go to the doctor or what they can do by themselves, how to cope with itching and sleep disturbance, understanding how to use corticoid steroids in a proper way and things like that.


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

Yes, well we have some kind of a booklet where all the information is written down.


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

Yes sometimes they do.


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

The training course to become an Atopic dermatitis trainer is open to everybody so in these academies private practice dermatologists can participate and train themselves and ask about establishing their own training courses. We have these academies on a regional level. They exist in Bavaria, in the East of Germany and a private practice dermatologist can join our network.


  1. Puce How is your Atopic school funded ?

It’s funded by the insurance companies. In Germany we have about 500 insurance companies and most of them pay for patient education courses. Either the insurance companies reimburse the patients or they pay us and then we don’t have to invoice the patients. The patients are generally reimbursed the totality of the cost.


  1. Puce Where do the courses take place ?

Mostly in the hospital but it’s not a problem to organise this outside if necessary.


  1. Puce Do you have contact with other patient education teams, particularly those teams working with Asthma or Food Allergies ?

Yes there are some links because the same group, especially the paediatricians, who were involved in developing this course, were also involved in the asthma education course.


PATIENT EDUCATION IN YOUR COUNTRY :


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

Well these associations do a lot of patient education. They are informed of our course and they support it.


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

None at all.


  1. Puce Do you have schemes like the PAI (in France this is an individualised adaptation project linking parents, children and teachers) ?

No we don’t.


  1. Puce Besides Atopic schools, is patient education developed for other pathologies in your country, and if yes, which pathologies are concerned ?

Yes we also have this type of course for occupational skin diseases; contact dermatitis, so if a nurse or a hairdresser is affected we invite them for a training course. This is sometimes a ‘lunch to lunch’ , one day training course, which is similar to the Atopic school. There are also training courses for Psoriasis.


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

No, but in fact, what we have developed as Atopic dermatitis education is the actual government reference because we were commissioned by the health board to develop this project. They paid for the development of the program and the insurance companies pay for the reimbursement of the patients and things like that.


  1. Puce How many active education departments exist today in your country ?

That’s difficult to say but you see we have 6 academies so I would guess more than 30 schools exist.


  1. Puce Are there particular organisations to train the staff in patient education? If not, where are the staff trained ?

Yes we have these so called Atopic Dermatitis academies. These academies dispense the training. The academies developed the program and each academy is then in charge of their area. In each academy there are different centres who do education courses. In the academy where I started education we were training about 100 patients a year.


Thank you Thomas Diepgen


Prof. Thomas Diepgen


University Heidelberg

Dept. of Social Medicine, Occupational and Environmental Dermatology Thibautstr. 3

69115 Heidelberg,

Germany.