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 impact 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 disease duration was 15.8 years. About 16% of patients were depressed on a mood 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 declined as a direct result of the disease. The ability to continue in gainful employment or to maintain social contacts and leisure activities correlated with the course and severity of the disease and cognitive function. Most carers reported symptoms that clearly related to organic pathologies, anxiety and symptoms of depression. The occurrence of these symptoms was associated with disease severity. The professional career of 57% of relatives was also adversely affected by the patient's illness. Conclusions: MS has a profound impact on the patients' social roles and their relatives' well-being. In contrast to previous studies, a high divorce / separation rate among patients with MS was not observed. Severe disability and cognitive impairment are predictors of loss of employment, decline in the standards of living and withdrawal from social and leisure activities among patients and are strong indicators of stress among relatives.