E. L. E. F.
CARING AND SHARING, Newsletter 4
Education Programm

Matthias Schneider
Division of Rheumatology, Medical Clinic and Policlinic, Heinrich-Heine-University Düsseldorf; FRG

Education is one of the major topics of lupus selfhelp-groups. The goals may include increasing knowledge and altering negative patient attitudes about their disease. This should be associated with improved coping and outcome. Classical educational programs exist for patients with diabetes (involving topics like diet, insulin) and asthma. In rheumatology, most attention has focused on rheumatoid arthritis (e.g. including joint protection techniques).

Educational methods include a variety of teaching, self-learning and problem-solving techniques.
There is a lot of written material for patient self-learning. A good example in SLE is Graham Hughes' booklet "Lupus". Most of the teaching in selfhelp-groups is given by talks of experts, which offer only a small amount of long-term increase of knowledge and only minor effects on behavior. In Germany, we therefore introduced special patient workshops with small group work lead by an expert.

Lay-led groups of selfhelp-groups are very helpful for daily life problem-solving and some coping, but they offer the risk of misleading information by the lay-professionals. In SLE, this will be further enhanced by the heterogenous expression of the disease.

Most of the typical educational methods will only reach patients already helped by an SLE specialist. This expert may inform and educate the patient on the best, the individual basis. But this patient and even more the other patients need a common level of general information about the disease to influence their health status by theirselves. The objectives of such information involve improving knowledge about the disease process and medical management, drugs, alternative treatments, relaxation and stress management, coping, problem-solving and self-efficacy.

In general, effects of educational programs are found to enhance compliance, to reduce complications given by the disease, to change self behavior with positive impact for the disease and to improve qualitity of life and selfhelp-techniques. To achieve these goals teaching programs have to be specifically designed for one disease.

The German rheumatology association has founded a special working group for the development of educational programs. For SLE, a group of physicans and psychologists from Berlin, Düsseldorf, Erlangen, Freiburg, Hagen, Regensburg has designed a teaching program with 4 modules:

1. Clinical features and how they develop

2. Treatment

3. Psychological aspects of the disease and coping

4. Sjögren's syndrome, overlap-syndrome, lupus and pregnancy (2 out of the 3).

Modules 1, 2 and 4 are held by a physican, 3 by a psychologist, for each module 90 minutes are provided. The programm documents include an instruction for the leader and overheads for every tropic of a session.

Until today. more than 100 patients have been educated by this program and we can now assess the extent to which the goals of the program have been met. Thereby our indication criteria for the education will also be evaluated. Starting the program, we thought that only patients with a proven disease and a duration of at least 6 months should be included, a severe CNS involvement is an exclusion criterium.