Interviews - Jean-Francois Stalder


France

ABOUT YOUR OWN STRUCTURE :


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

We have developed the two approaches. We do both individual interviews and collective workshops.


  1. Puce What type of patient comes to the Atopic school ?

The patients who come to the atopic school have either not succeeded in treating their eczema or have lost a significant quality of life due to their disease.


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

Since the Nantes Atopic School opened in 2002 we have integrated around 300 patients which represent around 60 patients per year. During a one year period there were no consultations due to lack of funding but the school has since re-opened.


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

There are 6 doctors involved: 4 hospital practitioners and 2 private practitioners. We also have 3 nurses, a psychologist and a nutritionist.

All the staff, apart from the nutritionist, have been trained at IPCEM, a french training institute where many care givers have trained in patient education, notably for diabetes and other chronic diseases.


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

Yes. Two dermatologist-allergologists participate on a contractual basis.


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

Apart from the dermatologist-allergologists integrated into the programme we haven’t yet established an operational network of experts outside of the hospital. This is something which should eventually be done. The principle blockage to this project is that doctors in private practice are paid by the medical ‘act’. The project of a hospital-doctor’s surgery eczema network was presented to a regional structure called URCAM and was twice refused, not having been seen as interesting for the deciders. This project was not then given the chance to be accepted and obtain the necessary funding.


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

The URCAM project was designed to integrate care givers in state run children’s programs, in pharmacies. For the moment this work is done through conferences to specific people. The network is not yet up and running.


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

Yes, we work closely with the teams involved in asthma or food allergies.


  1. Puce How is your Atopic school funded ?

The initial funding came from pharmaceutical labs (Astelles, Roche Posay) which enabled us to launch the school by paying a part-time nurse, and by paying the interventions of the doctors and the pyschologist for the first three  years of the structure. From the moment when the University hospital realised the value and interest of such a program, the school became an integral unit of the hospital. Today the hospital pay a part-time nurse, a part-time psychologist and around two days a week doctor’s presence.


If individual ;


  1. Puce Can you describe how the first interview takes place and what objectives are set ?

There are in fact two types of consultation : the first is a pre-selection visit where the patient is refered because of failed treatment. Here we investigate the patient’s medical history, his attempted treatments, and the potential of a family to manage the treatment of a child. This pre-selection step identifies those patients or families that need a supplementary education course, either through a longer individual interview or through  collective workshops.


  1. Puce Who conducts the interview (doctors, nurses, psychologists..) and how long does it last ?

The education consultation is an extended consultation of around 1 hour 15 mins, in the presence of a doctor and a nurse. The strong and weak points of the patient are specified. These can relate to his experience, pre-established beliefs, his motivation to follow a treatment, and the nature of his illness. Together, the patient, the doctor and the nurse decide on some education objectives and these then take the form of a contract between the patient and the care-givers.


  1. Puce What type of educational support tools do you use ?

We use tools which enable us to speak about the essential points concerning eczema : what is inflammation? What is skin dryness ? What are corticoid steroids ? What are ointments ?


  1. Puce How do you use these tools ?

We use visual tools developed by medical and pedagogical expertise. We use the image of fire to talk about inflammation, or the image of the walls of a house to talk about an atopic child’s skin. These images are then used again to explain the treatment proposed.


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

The follow-up happens, either as a medical consultation if there is a medical problem, or as a nurses consultation when the problem is more educative. A hotline has been set up as a nurse calls the patient to check on them, 15 days after the initial consultation.


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

The patient’s progress is evaluated on two levels: first using objective medical criteria as represented by SCORAD. We are working with the European Taskforce to propose a patient oriented self assessment; POSCORAD.

The other way to evaluate is to assess the patient’s quality of life as it is evaluated on entry into the school program and is re-assessed later on. The last way is the global satisfaction of the patients in relation to the skills or knowledge attained during the sessions relating to the management of their or their children’s disease.


If collective :


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

The workshops are organised around 4 different age groups: infants (only parents are present), children between 6 and 12 years, pre-ados and teenagers, and finally adults.

Two lots of 2 or 3 sessions are organised for each age group. Each session lasts around four hours and has between 6 to 8 patients. This represents around 40 sessions per year not to mention a voluntary adult support group.


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

The same staff are organised differently: each workshop is chaired by either a doctor or a nurse, assisted by an expert (usually a doctor) and this in the presence of the psychologist.

Everybody has of course been trained in the same way at the IPCEM training institute.


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

The collective education course follows the original educative diagnosis : we know the problems of each patient. Each workshop has a specific theme…


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

The different tools are used according to the age of the children. The photos for example, allow the patients to speak about a photo they have chosen, and by explaining why they chose a particular image they talk about how they feel about their disease. This is a common tool but we also use other tools including art therapy. The workshops are built around precise guidelines and a structured organisation. We may use different tools for each group but the content and the question and answer sessions follow the same principles.



PATIENT EDUCATION IN YOUR COUNTRY :


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

The associations play a minor role because there are not really well organised, representative associations that could help us. There is an official association, which was created to re-launch the atopic school but the membership is small. It’s something to develop in the future.


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

In France an organisation called the Patient Education Group manages education initiatives on a national level. It is a branch of the French Dermatology Society. This group includes a dozen teams in France who regularly participate in meetings to share experience, update knowledge and decide on reference material. This group also organises a symposium, during the Paris Dermatological Conference, for private dermatologists.


  1. Puce Do you have a project linking parents, children and teachers ?

A scheme, the PAI, is proposed in schools to manage, in particular, food allergies. The problem in France is that there is no existing cooperation between the Health Boards and the National Education. The number of school doctors, who could serve as interface, is insufficient and their professional objectives make it difficult for them to adapt to the reality. This is a pity. So there is a lot of room for progress in this field.


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

There are several existing groups and projects for diseases such as Asthma, diabetes, cardio-vascular disease, and also rare diseases such as cystic-fybrosis or hemophelia. These diseases, which affect the patient’s quality of life benefit from educative programs. Recently, a ministerial white paper has been published in order to encourage this educative approach.


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

In January 2007, a referential guide was published in the Dermatology Annals.


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

There are 6 or 7 atopic schools of the same type. Apart from Nantes there are centres in Brest, Nancy, Nice. There is a centre which is being launched in Bordeaux and one for rare diseases in Paris Necker.


Thank you Jean-Francois Stalder.

Prof. Jean-Francois Stalder


Dept. of Dermatology,

Hôtel Dieu, CHU,

44000, Nantes,

France.