Acta Neurol Scand 2003 May;107(5):363-8
Heesen C, Kolbeck J, Gold SM, Schulz H, Schulz KH.
Department of Neurology, Department of Medical Psychology, Department of Hepatobiliary Surgery, University Hospital Eppendorf, Hamburg, Germany.
The need for an early disclosure of the diagnosis of multiple sclerosis (MS) has become more pressing with the publication of two recent randomized trials which have indicated that very early treatment may favourably alter the disease course.
We assessed the current status of diagnostic and therapeutic information on MS from the point of view of patients and neurologists.
A standardized questionnaire was sent out through the patients' self-help organization in Hamburg, Germany and to all neurologists.
A total of 434 of 1300 patients and 80 of 250 neurologists replied.
Neurologists gave 90% of the diagnoses but only 50% of patients reported them as the major aid helping to understand the disease.
Fifty per cent of patients were not informed about any form of therapy at the time of diagnosis regardless of whether their MS diagnosis was disclosed within the last 5 years or earlier.
In contrast to physicians, patients voted for information about a possible MS even if the diagnosis may not yet be clear.
From the patients' perspective, information about the diagnosis of MS should be more straightforward, and more information about therapies should be provided.