The social impact of multiple sclerosis - a study of 305 patients and their relatives

Purpose: to assess the effects of multiple sclerosis (MS) on the patients' ability to fulfil their chosen family and social roles and to examine the i mpact of the disease on their relatives. Methods: a population-based survey of all known patients with MS and their relatives in Hampshire County, England, between 1986 and 1989. Results: Seventy-four % of the total study population of 411 completed the study. The patients' mean age was 48.3 years (range 19-82) and the mean dis ease duration was 15.8 years. About 16% of patients were depressed on a moo d rating scale and a similar number also exhibited symptoms of anxiety. The marital status of most patients had not changed since the onset of MS but 53% of those who were employed at the time of diagnosis gave up their jobs and the standards of living of 37% of patients and their families had decli ned as a direct result of the disease. The ability to continue in gainful e mployment or to maintain social contacts and leisure activities correlated with the course and severity of the disease and cognitive function. Most ca rers reported symptoms that clearly related to organic pathologies, anxiety and symptoms of depression. The occurrence of these symptoms tvas associat ed with disease severity. The professional career of 57% of relatives was a lso adversely affected by the patient's illness. Conclusions: MS has a profound impact on the patients' social roles and the ir relatives' well-being. In contrast to previous studies, a high divorce/s eparation rate among patients with MS was not observed. Severe disability a nd cognitive impairment are predictors of Loss of employment, decline in th e standards of living and withdrawal from social and leisure activities amo ng patients and are strong indicators of stress among relatives.