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

Abstract

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.

Living with multiple sclerosis: longitudinal changes in employment and the importance of symptom management

“…A majority of both male and female survey respondents came from the 45-64 age groups. The demographic characteristics of respondents to the 2003 survey were similar to those of other contemporary Australian studies [3,24], supporting the suggestion that respondents were broadly representative of Australians with MS. Some of the differences that were found with published studies are described below (see Discussion: limitations of study).…”

Evidence for deficits in facial affect recognition and theory of mind in multiple sclerosis

“…Both the MS and control groups were predominantly women (66.7% and 63.3%, respectively), and did not signifi cantly differ in the number of years of education [ M = 15.0, SD = 3.44 and M = 14.8, SD = 2.57, respectively; t (55) = 0.32, p = .75]. Overall, the characteristics of the MS participants were broadly comparable with those from a recent database sample including 2618 respondents with a diagnosis of MS in New South Wales (see Tribe et al, 2006 ).…”

Evaluation of the Neurodegenerative Conditions Coordinated Care Program (NCCCP) in Western Australia: Barriers to better service provision

“…Pozzilli, Brunetti, Amicosante, Gasperini, Ristori, Palmisano, et al (2002, p.250) interviewed MS patients in Italy to compare, the cost effectiveness of home based care versus hospital care found that "comprehensive planning of home based intervention implemented by an interdisciplinary team and designed specifically for people with multiple sclerosis may provide a cost-effective approach to management and improve the quality of life". However, Tribe, Longley, Fulcher, Faine, Blagus, Pearce, et al (2006) in their study of Multiple Sclerosis patients living in New South Wales, Australia, found that for those living further away from major cities personal support needs were less reliable.…”

“…Tribe et al (2006) also found that services for rural clients were less reliable. The program is reliant on brokering other service providers to perform in-home services and clients are required to travel to the metropolitan area for out-of-home respite.…”

“…MSS WA achieved this by increasing in-home respite services; however out-of-home respite services remain very limited especially in rural areas (Tribe et al, 2006). In addition MSS WA communicated more with other service providers to increase the knowledge of the program which facilitated an increase in referring more clients into the program and increased self referrals.…”