Grant: Doctoral Research Award - PA: Patient-Oriented Research - Clinical Epidemiology

Multiple sclerosis (MS) is commonly thought of as an inability to walk, with confinement to a wheelchair or nursing home bed inevitable. While disease progression is expected in MS, disability is not the main concern for persons with MS and their families; it is depression and disconnection. Depression is found in 25-50% of the MS population, compared to only 10-15% in the general population. Depression impacts quality of life and the day to day functioning of MS patients. Depression in MS is further complicated by the fact that depression, like MS, can be related to neurological damage. Thus, patients, caregivers and health care providers often have difficulty differentiating depression symptoms from MS symptoms. The aim of the study is to improve the understanding and management of depression in MS by characterizing, clarifying and educating MS patients, caregivers and health care providers about the physical, psychological and social aspects of depression, as well as the optimal coping and treatment strategies. There will be four phases to this research: a systematic review of the literature on depression in MS; a mixed methods study to gather information about MS patients', caregivers' and care providers' perceptions and experiences with depression in MS; development of a depression management educational program for MS patients and their families; and a randomized controlled pilot trial of the effectiveness of the education program for managing depression. MS is the most common neurological disease among young Canadians, as unfortunately, Canada has one of the highest rates of MS in the world. This research will add to the current body of knowledge regarding depression in MS, provide a springboard for better understanding and managing depression among the MS population, and address one of the most significant quality of life concerns for MS patients and their families.