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Journal of Neurology

, Volume 257, Issue 6, pp 926–936 | Cite as

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

  • Rex D. Simmons
  • Kate L. Tribe
  • Elizabeth A. McDonald
Original Communication

Abstract

People with multiple sclerosis (MS) tend to have lower participation in paid employment compared to those with other chronic diseases. In two large-sample, self-report surveys of MS patients performed 4 years apart, employment rates were measured both cross-sectionally and longitudinally. The reasons for employment loss and perceived risk of future employment loss were also assessed. A total of 1,135 patients responded to the first survey, 1,329 to the second, and 667 to both. Longitudinal loss of employment was 5.4% over the 4 years 2003–2007, a period of relative national economic prosperity. By 2007, 56% of MS patients had lost employment due to MS and 64% were not in the paid labour force. Regression analysis indicated that men were more likely than women to leave their employment because of their MS, and older people were more likely than younger ones to do so. Level of occupational skill using Australian Bureau of Statistics categorisation was not predictive of maintaining or losing employment. The main reasons reported by people with MS for their loss of employment involved the ineffective management of symptoms of MS in the workplace, rather than workplace-related factors including insufficient flexibility of employment conditions or being asked to leave or sacked. The most frequently listed symptoms relating to employment loss, and perceived risk of losing current employment, were fatigue, mobility-related symptoms, arm and hand difficulties, and cognitive deficits. These findings imply that many employees with MS are leaving their planning for effective symptom management, and for appropriate accommodations in the workplace, until such planning is too late to be effective. The potential advantages of early, supported disclosure of diagnosis to employers before MS symptoms become a problem are discussed.

Keywords

Multiple sclerosis Symptoms Employment Longitudinal 

Notes

Acknowledgments

This study was funded by MS Research Australia from corporate donations, including from Perpetual Trustees Philanthropic Division, Deloitte Australia, Bayer-Schering, Biogen-Idec, Merck-Serono and Sanofi-aventis. We thank Maureen Bourne and Naheen Zama for data collation, Deborah Bradshaw for data entry and Dr Terry Neeman for statistical analyses. We also thank Dr Delia Hendrie for assistance with the 2003 survey design and some analyses. Many people had input into the 2007 survey design used in this work, including senior staff at most State and Territory MS Societies in Australia and Dr Lynne Pezzullo at Access Economics Pty Ltd, Canberra. Finally, we thank the volunteers at MS Australia, ACT Branch, for assistance with survey collation and mail-out.

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Copyright information

© Springer-Verlag 2010

Authors and Affiliations

  • Rex D. Simmons
    • 1
  • Kate L. Tribe
    • 2
  • Elizabeth A. McDonald
    • 3
  1. 1.Australian MS Longitudinal StudyCanberra HospitalWodenAustralia
  2. 2.Tribe Research Pty LtdSydneyAustralia
  3. 3.MS AustraliaBlackburnAustralia

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