THE ATTITUDE OF PATIENTS WITH MULTIPLE-SC LEROSIS TO INFORMATION ABOUT THEIR DISEASE

The timing and extent of information which should be given to sufferer s from multiple sclerosis (MS) are usually discussed without knowing t he patients' opinion. In a pilot study we therefore retrospectively as ked 50 patients with relapsing MS (mean age 34+/-9 years) for their fe elings before and after having been informed about suffering from this disease and in respect to the timing of this information by means of an anonymous questionnaire. The response rate was 86%. Patients report ed a high rate of anxiety, depressed mood, uncertainty and concern eve n before having been told about suffering from MS. Information about t he diagnosis caused a further slight increase of these negative feelin gs but initiated much stronger positive feelings such as courage for f ighting the disease and clarity about their situation. Patients' opini on regarding the timing of information was heterogenous but only 3 (7% ) would have preferred to be informed later or not at all. Especially patients with moderate to severe disability had wanted earlier informa tion. Our results document the request of MS patients for full but ind ividually timed information.