MEMBERSHIP OF A PATIENTS ASSOCIATION AND WELL-BEING - A STUDY INTO THE RELATIONSHIP BETWEEN MEMBERSHIP OF A PATIENTS ASSOCIATION, FELLOW-PATIENT CONTACT, INFORMATION RECEIVED, AND PSYCHOSOCIAL WELL-BEING OF PEOPLE WITH A NEUROMUSCULAR DISEASE

This article presents the results of a study into the relationship bet ween membership of a patients' association, information received, fell ow-patient contact and psychosocial well-being. Data were collected fr om a group of people with myotonic dystrophy and spinal muscular atrop hy (n = 349). About 60% of this group are members of a patients' assoc iation for people with a neuromuscular disease. No direct relationship was found between membership of the patients' association and well-be ing. Membership, however, was positively related to the number of fell ow-patients with whom one has had personal contact and also to the amo unt of information received about the disease and related factors. Hav ing personal contact with more fellow-patients was related to a better well-being in the group of patients who had a relatively low level of physical functioning. There were no indications that receiving inform ation leads to better well-being. The results of this study indicate t hat membership of a patients' association, through promoting fellow-pa tients contacts, can be beneficial to people with a chronic disease, e specially to people who are relatively severely ill.