Identifying information needs of people with multiple sclerosis

Abstract

This article reports on a survey to identify the information needs of people with multiple sclerosis (MS), both at the time of diagnosis and throughout the course of the disease. The gap between information required and received was vast. The greatest difficulties faced by people with MS were finding information on research trials; drug treatments; emotional changes; new and unusual symptoms; and balance and walking problems. The expressed a preferred for information provision through face-to-face meetings and leaflets. Although provision of information has improved greatly, there is still a long way to go before all needs are satisfied.