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.

The prevalence of cognitive impairment in a community survey of multiple sclerosis.

A one in two alternate sample (N = 200) from a population-based register of 411 people with multiple sclerosis (MS) was studied. Out of this sample, 147 people with MS and 34 people with rheumatoid arthritis were interviewed at home and completed a battery of neuropsychological tests. Cognitive impairment was found in 46 per cent of those with MS, with memory impairment in 34 per cent and failure on tests of frontal lobe function in 33 per cent. Physical disability was associated with cognitive impairment. Memory impairment was more common in those who had had MS for 10 years or more. A significant minority of people with mild physical disability and some who had had MS for less than a decade nevertheless had cognitive impairment. Relationships between cognitive impairment, other disease variables and psychosocial factors were examined. Counselling and rehabilitation programmes for people with MS and their families should take account of cognitive deficits that may be present.

The prevalence of multiple sclerosis in the Southampton and South West Hampshire Health Authority.

A first survey of the Southampton and South West Hampshire Health Authority showed an overall prevalence of multiple sclerosis of 99/100,000 in a population of 417,000 on 1 January 1987. This finding is similar to other recent first surveys in the South of the United Kingdom and only repeat surveys will show if case only repeat surveys will show if case ascertainment has been more complete in these than earlier first studies in Scotland.