Multiple sclerosis: patients’ information sources and needs on disease symptoms and management

OBJECTIVE: To investigate the current information sources of patients with multiple sclerosis (MS) in the early stages of their disease and to identify patients’ preferred source of information. The relative amounts of information from the different sources were also compared. METHODS: Participants at a newly diagnosed information session organized by the Multiple Sclerosis Society of South Australia were invited to complete a questionnaire. Participants were asked to rate on a visual analog scale how much information they had received about MS and optic neuritis from different information sources and how much information they would like to receive from each of the sources. RESULTS: A close to ideal amount of information is being provided by the MS society and MS specialist nurses. There is a clear deficit between what information patients are currently receiving and the amount of information they actually want from various sources. Patients wish to receive significantly more information from treating general practitioners, eye specialists, neurologists, and education sessions. Patients have identified less than adequate information received on optic neuritis from all sources. CONCLUSION: This study noted a clear information deficit regarding MS from all sources. This information deficit is more pronounced in relation to optic neuritis and needs to be addressed in the future. PRACTICE IMPLICATIONS: More patient information and counselling needs to be provided to MS patients even at early stages of their disease, especially in relation to management of disease relapse.