Living With Multiple Sclerosis in New South Wales, Australia, at the Beginning of the 21st Century: Impact of Mobility Disability

This article is the initial report on the Multiple Sclerosis (MS) Society of New South Wales (NSW) Client Census Database study, a telephone-based cohort study of registered clients of the society in 2001. The final database sample comprised 2618 respondents with a diagnosis of MS from the registered client database, representing 73% of this target client population and an estimated 70% of all people with MS in NSW, Australia. The mean age was 49 years, and mean time since diagnosis was 11 years, with 36% diagnosed in the past 5 years. Approximately three-quarters (74%) were women. The mobility disability profile of the sample covered the entire spectrum, with half reporting being able to walk without a mobility aid and only 17% being confined to a wheelchair. The average age of respondents confined to a wheelchair was 56 years. Most respondents reported other MS symptoms they felt were disabling, such as fatigue and abnormal sensory symptoms. Most were living with a partner or spouse but were less likely to be living with children in the family home than the general NSW population. Only 5% were living in supported accommodations. Only a third of respondents were employed, with greater levels of disability leading to greater levels of unemployment—full-time employment being more adversely affected than part time and men being more disadvantaged than women with MS compared with their general NSW population counterparts. Essential medical care and personal support needs were mostly well met but less reliably so for the most severely disabled respondents and those living farther from major cities. The most frequently reported unmet needs were for breaks from home and employment support. Less than half of the sample reported being on immunotherapy. Those who were on immunotherapy were more likely to be women, employed part time, and experiencing only mild or moderate mobility disability.