Interviews - Mette Deleuran


Denmark

ABOUT YOUR OWN STRUCTURE :


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

We have a collective approach. We have sessions in an auditorium where we talk to the people. It’s the parents of children affected by Atopic dermatitis that we educate about what Atopic dermatitis is and how to treat it. We have individual consultations with doctors and nurses but it’s not planned in advance. If we see that a consulting family need extra information then we can give them around 30 mins individual training.


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

I think we cover about 100 children a year, which corresponds to about 150 parents coming to our sessions. The profile of the patients is mixed, but we do of course have quite a few severe cases as we recruit the parents mostly from those children who are in our hospital department. Saying this we do have patients with mild to moderate forms of eczema who are referred by their GP but they all have chronic eczema. Those patients with 2 weeks of eczema per year don’t generally come to the Atopic school. It has to be a problem for the parents to make them want to come to the school.


  1. Puce Do you see the patients before the education courses ?

Yes well we see most of them already in our department and when we see that the parents are in difficulty we suggest they participate in the education program. However, we don’t necessarily see the patients who were referred by other doctors.


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

There are two consultants who alternate in giving the lectures and we also have 2 to 3 nurses involved in the program. There is also a social worker who advises parents on getting reimbursed for the treatment or getting financial help for severe cases. There are also special nurses’ consultations on practical issues such as wet wrap etc.


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

Well my colleague Anne Olesen and I have trained the staff and those that are especially interested have gone to conferences, they have read about it and we have a nurse who has done a course in the university about communicating with patients and things like that so we don’t have a specific training program for the trainers. We do it ourselves.

We often discuss with the staff about what approach to have to the disease but there is no official training.


  1. Puce Do you use educational support tools and, if yes, what type of tools are used with the patient ?

I do a power-point presentation and the nurses do the same and we hand out copies of that. Then we give them a folder with different information about the nature of the disease and the treatment etc. We also give them a sort of toilet bag with different creams and moisturisers with varying fat content and we teach them when to use the greasy ones and when to use the thinner ones. We also hand out a wall chart with a drawing of the front and the back of the body so they can localise where to apply the treatment.

The parents can then communicate through this chart where they have put treatment or not…


  1. Puce Is there a follow-up ? If so, how is the follow-up organised, and who conducts it ?

We do this lecture in the spring and another in the autumn. We do 2 and a half-hours each time and so the parents get about 5 hours of training. We do the follow-up individually, either in the hospital or in the private practice when the patients return for a consultation. We have elaborated a questionnaire and the response is very positive.


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

Well we haven’t done a formal evaluation but we do have the questionnaires where we ask the participants if they feel they were better informed and able to better take care of their children and in general what they got out of the program. I’ve had parents who said to us: “Why didn’t I go to the eczema school 5 years ago?” They feel they are better prepared not only to take care of their child but also to deal with all the information they get from the outside, and all the advice they can have from magazines or friends etc.


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

No, they are not directly involved in the Atopic school but sometimes they come to our sessions to see what we actually say to the patients, and of course they educate in their own practice. They can refer patients to us and we don’t treat these patients. They only participate in the Atopic school.


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

There’s no official link. The activity is centred in the hospital department.


  1. Puce How is your Atopic school funded ?

It’s actually funded by my department. We do have some small grants from labs that make emollients but in general it comes from the hospital budget.

It’s not that big a cost because we don’t do it so often.


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

I know the people who do the Asthma school at the paediatrics department and we have talked but we don’t have an official link with them.


PATIENT EDUCATION IN YOUR COUNTRY :


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

Well not directly but there are certain patient support groups and websites where you can get advise. We also have the allergy and asthma associations who do some things for patients.


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

Well, they don’t do anything but sometimes we encourage the parents to go to the school and talk about their child’s disease and they may involve the school nurse in that but we don’t do anything like that.


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

No there are no formal schemes like that. There are some kindergartens that keep an eye on allergies but it’s not really developed in Denmark.


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

We have schools for asthma, chronic obstructive lung disease, cardio vascular disease and of course diabetes. We have talked here about a psoriasis school and maybe a skin cancer school but we haven’t had the means to do it.


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

No I think the authorities are very interested in guidelines but no standardisation exists at the moment.


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

We have 5 eczema schools in Denmark and the concept of education differs from department to department.


  1. Puce How much do you invoice the whole education course ?

The patients don’t pay anything for this course.


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

In Denmark, you have to pay the first 50% of your medical expenses. When you go over 200€ in total for a year you are reimbursed 75%, and after 400€ it’s 85% reimbursed. But if you have a child with a chronic illness which lasts more than one year then you can in fact be 100% reimbursed. You have to apply for this to the health board but in this case you can be paid for everything: emollients, bandages, creams etc.


Thank you Mette Deleuran



Dr. Mette Deleuran


Ledende overlæge, dr.med.

Dermatologisk Afdeling S

Århus Sygehus

P.P.Ørumsgade 11

8000 Århus C,

Denmark.