[Attitude of patients with multiple sclerosis to illness information]

The timing and extent of information which should be given to sufferers from multiple sclerosis (MS) are usually discussed without knowing the patients' opinion. In a pilot study we therefore retrospectively asked 50 patients with relapsing MS (mean age 34 +/- 9 years) for their feelings 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 reported a high rate of anxiety, depressed mood, uncertainty and concern even before having been told about suffering from MS. Information about the diagnosis caused a further slight increase of these negative feelings but initiated much stronger positive feelings such as courage for fighting the disease and clarity about their situation. Patients' opinion regarding the timing of information was heterogeneous 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 information. Our results document the request of MS patients for full but individually timed information.