Vasculitis' Patient's Training - First Results

by Dr. Dipl.-Psychologe Juergen Hoeder, Rheumaklinik Bad Bramstedt

The problem

Vasculitides are rare.Only 60 in a million, for example, suffer from Wegener's Granulomatosis. It is difficult for the concerned to find suitable and understandable information and to get professional help in learning to cope with this lifethreatening disease. To diagnose a relapse in time can be vital. Many General Practitioners are - understandably - not experienced enough in this field.Literature for patients to consult didn't exist for a long time, either.

The solution:

The solution lies close at hand: we have to train the patients themselves. In Bad Bramstedt Clinic this idea was conceived early. Since 1991 we havegiven information classes regularly for our patients. At the beginning they were largely resembling lectures by doctors but by and by they have been changed into an educational program that meets the requirements of the qualitiy standards of the German Society for Rheumatology. These standards require an analysis of the patient's desires plus a check of the acceptance on the part of the patients (How do the patients judge the various elementsof the educational program?)

Here some information in detail:

What do our patients wisht to learn?

A questionnaire with 42 questions covering the fields of medicine, psychology, diet, gymnastics/sports, self-management, sexuality and pregnancy, and social law were distributed by mail to 100 patients of the vasculitis-centre of Bad Bramstedt Clinic chosen fortuituously; 80 questionnaires were filled out and sent back.

The topics patients thought most important were

• medical questions (for example: what kind of important side-effects are there and how can one avoid them?)
• psychological questions (for example: How can patients reconcile themselves to their illness and all its consequences?)

The themes patients thought least important were

• themes concerning social law (Can one claim a qualifying certificate for disabled people?) and
• themes concerning sexuality (Can vasculitis make men impotent?)

Acceptance of our educational programme

We have developed our educational program based on our daily experience and the results of the questionnaires. How do our patients judge the program? We did an anonymous interview with the following results: on a scale from nil to one hundred points, 100 patients bestowed an average of 84 points. There was no difference between elderly and young patients. Even the different seminars and lecturers were judged equally good. The friendly and sensitive way of the instructors was thought of particularly laudable. as well as their expertness and the lively and varied arangement of the seminars. All in all the patients confirmed that we had chosen the right themes and imparted them to the listeners in an appealing way.

back