Interviews - Marianne Morren


Belgium

ABOUT YOUR OWN STRUCTURE :


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

We have a combined approach, children are seen at our dermatology department and the most difficult patients are seen in a specialised consultation by a dermatologist specialised in atopic dermatitis and pediatric dermatology (which is held two half days a week). Those with a combined severe problem of food allergy or asthma (and AD) are later seen at a joint consultation (which is held every month) by a dermatologist and pediatric allergologist (with the possibility to consult a dietician specialized in food allergy). Thereafter these patients are offered the possibility to join the atopic school.


If individual ;


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

   We have seen about 3000 new patients in these specialised consultations (which exist since 1994 for the atopic dermatitis consultation and since 2002 for the multidisciplinary consultation with the pediatric allergologist.


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

We ask about the history of eczema (when it started), how frequently flares happen, if the parents or patient has an idea what triggers flares, we ask questions about the environment, about the daily hygiene, about school, hobby, work (in adults), about past treatments and their results…

A summary is made afterwards and information is given about delicate situations for eczema patients (e.g. correct bathing, environment, carrier choice) and if allergic triggers are suspected, tests are planned (mostly prick and blood tests RAST; sometimes also patch tests).

Finally a therapy is given and an explanation about the way to treat and the amount of creams needed (with a scheme of the finger tip unit for children and adults).


  1. Puce Who conducts the interview (doctors, nurses, psychologists..)?

Doctors (dermatologist and/or pediatric allergologist)


  1. Puce How long does it last?

Half an hour, sometimes much longer.


  1. Puce What types of objectives are set during the initial interview?

  2. 1. Understand what atopic dermatitis is, understand the chronicity of the disease, how          triggers can be avoided.

  3. 2. Identify triggers (both irritant and allergic if necessary with supplementary tests, explaining the treatment to follow).

  4. 3. Improve treatment and therapy adherence


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

We give a folder with more information, with tips and with some games like a cross word puzzle concerning eczema.


  1. Puce How do you use these tools?

We distribute them after we have given the explanation about atopic dermatitis and possible triggers.


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

Most patients have at least one follow up at these specialized consultations, some return to their dermatologist, but most severe cases are followed at our department or together with the paediatricians. Babies and children are offered the possibility to enter the atopic school


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

By clinical evaluation


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

One doctor, 2 nurses (for the specialised consultation and atopic school)


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

Those dermatologists formed at our department send patients if the eczema is severe, some send patients only for the class with the nurses although we do not encourage this. At this moment it is not possible to give classes for everyone because of lack of time.


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

No active link, information is available on the web site of our hospital


  1. Puce Is your Atopic school attached to a network of care-givers (pharmacists, nurses, state medical programs…)?

No


  1. Puce How is your Atopic school funded?

Specialised consultation within the clinic (as we are a tertiary centre, specialized consultations are appreciated). We have some industry funding for the atopic school.


If collective (the sessions have been up and running since June 2007)


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

About 300


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

We have different workshops: - for babies and their parents ; for children between 3-6 years with their parents, for children 7-14 alone


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

Dermatologist, nurse, with feed back from a psychologist who has given us some advise, and has participated in one class (we can send patients when needed, there is not enough staff to have them all the time).


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

One dermatologist experienced in treating atopic dermatitis (trained at the allergology department and one month in Munich, attended world congresses on atopic dermatitis) and 2 nurses who followed the consultation of atopic dermatitis and some workshops elsewhere, they will also follow a formal course given by the university of Utrecht in the Netherlands.


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

1.Give information about the disease and possible triggers and enhance self management, and this by nurses so that medical jargon is avoided

2.Improve the therapy adherence

3.Make the treatment more enjoyable

4.Show that many others have the same problem

5.Offer some tricks to improve well being

6.Try to integrate the disease in every day life


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

1.A map with all kind of information (about the disease, about testing, about skin barrier, ….)

2.Dolls to demonstrate putting creams

3.A magic box with tools to alleviate itch

4.After the session children receive a cd rom with a film demonstrating how to apply creams and for small children and a song to accompany the hydration treatment.

5.Diploma

6.Power point presentation for older children

As we are JCI accredited we can only use material that can be rinsed with water      


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

No, but some send their patients


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

No link at this moment


  1. Puce How is your Atopic school funded?

It is done within the budget of the hospital, we initially had the support of La Roche Posay and last year we received a grant from Pierre Fabre foundation


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

We have a joint consultation with the pediatric allergologist. There is currently no atopic school for asthma or food allergy.


ABOUT PATIENT EDUCATION IN YOUR COUNTRY:


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

At this moment no role


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

Some schools are operating for re-education. There is as far as I know no national program for this. Initiatives are local. However many hospitals have some programs.


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

No


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

Many departments have some kind of patient information programs: back pain school, school for patients with cardiac problems, spina-bifida school, diabetes school.


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

No


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

5 at this moment for atopic dermatitis (most at university departments, most have however just started.


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

No, we tried to organize it ourselves, with some information from other centers.


  1. PuceHow much do you invoice the whole education course?

We ask the honorarium of a consultation.


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

Nothing.


Thank you Dr Morren


Dr. Marianne Morren


Dept. Dermatology,

UZ Leuven,

Belgium.