Information Needs for Patients with Multiple Sclerosis: a Study of patients with MS in the Gulf Region
Associate Professor, Department of Information Science, Qatar University
Multiple Sclerosis (MS) is a neurological chronic disease with unpredictable course. Although it was first identified in the 1860s, the cause of MS remains in dispute and a cure is elusive. MS, characterized with attacks and remissions, damages the insulation or myelin sheath that surrounds the nerve fibers in the central nervous system (the brain and the spinal cord). When the sheath is destroyed, hardened plaques of varying sizes form and cause a slowing or complete obstruction of the nerve impulses, something that might eventually lead to partial or complete disability. MS strikes women more than men (ratio is around 2:1) and affects adults between 20-40. Although no exact figures are available. MS affects approximately 250-300,000 in the Unites States alone and about 85,000 in the UK. In spite of the fact that MS is predominant among white women living in colder climates, typically the States and Europe, it became more common in other parts of the world in recent years including the Middle East.
There have been very few studies that dealt with information needs or information seeking behavior of patients with MS, none of which were carried outside the US or Europe. Because the number of patients affected by MS is increasing rapidly in the Middle East, it became more compelling to conduct such a study. This study aims at identifying information needs for MS patients in the Gulf region as well as shedding the light on how people with MS seek information and what their sources of information are. It also aims at specifying what data, information and knowledge should be available to people with MS and recommend how this should be done. . A questionnaire is to be distributed among a sample of patients in Qatar representing countries in the Gulf region to collect the required data.
It is expected that the results of this study will help improve the information provided to patients with MS and, thus, enhance their quality of life. Moreover, It will provide guidance for service prov iders in the health and social services as well as voluntary organizations and public information providers.