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


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.


Multiple sclerosis Symptoms Employment Longitudinal 



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.


  1. 1.
    Access Economics Pty Ltd (2005) Report to MS Australia: Acting positively: strategic implications of the economic costs of MS in Australia.
  2. 2.
    Australian Institute of Health and Welfare (2009) Chronic disease and participation in work. Publication Catalog Number PHE 109. AIHW, CanberraGoogle Scholar
  3. 3.
    Barnett MH, Williams DB, Day S, Macaskill P, McLeod JG (2003) Progressive increase in incidence and prevalence of multiple sclerosis in Newcastle, Australia: a 35-year study. J Neurol Sci 213:1–6CrossRefPubMedGoogle Scholar
  4. 4.
    Dyck I, Jongbloed L (2000) Women with multiple sclerosis and employment issues: a focus on social and institutional environments. Can J Occup Ther 67:337–346PubMedGoogle Scholar
  5. 5.
    Gronning M, Hannisdal E, Mellgren SI (1990) Multivariate analyses of factors associated with unemployment in people with multiple sclerosis. J Neurol Neurosurg Psychiatr 53:388–390CrossRefPubMedGoogle Scholar
  6. 6.
    Hammond SR, McLeod JG, Macaskill P, English DR (1990) Multiple sclerosis in Australia: socioeconomic factors. J Neurol Nurosurg Psychiatr 61:311–313CrossRefGoogle Scholar
  7. 7.
    Halper J (2007) The psychosocial effect of multiple sclerosis: the impact of relapses. J Neurol Sci 256:S34–S38CrossRefPubMedGoogle Scholar
  8. 8.
    Hirst CL, Ingram G, Pickersgill TP, Swingler RJ, Compston DA, Robertson NP (2008) Increasing prevalence and incidence of multiple sclerosis in South East Wales. J Neurol Neurosurg Psychiat Oct 17 E-pubGoogle Scholar
  9. 9.
    Hohol MJ, Orav EJ, Weiner HL (1995) Disease steps in multiple sclerosis: a simple approach to evaluate disease progression. Neurology 45:251–255PubMedGoogle Scholar
  10. 10.
    Hohol MJ, Orav EJ, Weiner HL (1999) Disease steps in multiple sclerosis: a longitudinal study comparing disease steps and EDSS to evaluate disease progression. Mult Scler 5:349–354PubMedGoogle Scholar
  11. 11.
    Jackson MF, Quaal C, Reeves MA (1991) Effects of multiple sclerosis on occupational and career patterns. Axone 13:16–20PubMedGoogle Scholar
  12. 12.
    Johnson KL, Yorkston KM, Klasner ER, Kuehn CM, Johnson E, Amtmann D (2004) The cost and benefit of employment: a qualitative study of experiences of persons with multiple sclerosis. Arch Phys Med Rehabil 85:201–209CrossRefPubMedGoogle Scholar
  13. 13.
    Julian LJ, Vella L, Vollmer T, Hadjmichael O, Mohr DC (2008) Employment in multiple sclerosis: exiting and re-entering the workforce. J Neurol 255:1354–1360CrossRefPubMedGoogle Scholar
  14. 14.
    Kornblith AB, LaRocca NG, Baum HM (1986) Employment in individuals with multiple sclerosis. Int J Rehab Res 9:155–165Google Scholar
  15. 15.
    LaRocca N, Kalb R, Scheinberg L, Kendall P (1985) Factors associated with unemployment in multiple sclerosis. J Chron Dis 38:203–210CrossRefPubMedGoogle Scholar
  16. 16.
    McDonald WI, Compston A, Edan G, Goodkin D, Hartung HP, Lublin FD, McFarland HF, Paty DW, Polman CH, Reingold SC, Sandberg-Wollheim M, Sibley W, Thompson A, van den Noort S, Weinshenker BY, Wolinsky JS (2001) Recommended diagnostic criteria for multiple sclerosis: guidelines from the International Panel on the diagnosis of multiple sclerosis. Ann Neurol 50:121–127CrossRefPubMedGoogle Scholar
  17. 17.
    Neath J, Roessler RT, McMahon BT, Rumrill PD (2007) Patterns in perceived employment discrimination for adults with multiple sclerosis. Work 29:255–274PubMedGoogle Scholar
  18. 18.
    O’Connor RJ, Cano SJ, Ramio i Torrenta L, Thompson AJ, Playford ED (2005) Factors influencing work retention for people with multiple sclerosis. Cross-sectional studies using qualitative and quantitative methods. J Neurol 252:892–896CrossRefPubMedGoogle Scholar
  19. 19.
    Orton SM, Herrera BM, Yee IM, Valdar W, Ramagopalan SV, Sadovnick AD, Ebers GC, Canadian Collaborative Study Group (2006) Sex ratio of multiple sclerosis in Canada: a longitudinal study. Lancet Neurol 5:932–936CrossRefPubMedGoogle Scholar
  20. 20.
    Rumrill P, Roessler R, Vierstra C, Hennessey M, Staples L (2004) Workplace barriers and job satisfaction among employed people with multiple sclerosis: an empirical rationale for early intervention. J Vocat Rehab 20:177–183Google Scholar
  21. 21.
    Simmons RD, Hall CA, Gleeson P, Everard G, Casse RF, O’Brien ED (2001) Prevalence survey of multiple sclerosis in the Australian Capital Territory. Intern Med J 31:161–167CrossRefPubMedGoogle Scholar
  22. 22.
    Smith MM, Arnett PA (2005) Factors related to employment status changes in individuals with multiple sclerosis. Mult Scler 11:602–609CrossRefPubMedGoogle Scholar
  23. 23.
    Sweetland J, Riazi A, Cano SJ, Playford ED (2007) Vocational rehabilitation services for people with multiple sclerosis: what patients want from clinicians and employers. Mult Scler 13:1183–1189CrossRefPubMedGoogle Scholar
  24. 24.
    Tribe KL, Longley WA, Fulcher G, Faine RJ, Blagus L, Pearce G, Hope AD, Henderson EM (2006) Living with multiple sclerosis in New South Wales, Australia, at the beginning of the 21st Century: impact of mobility disability. Int J MS Care 8:19–30Google Scholar
  25. 25.
    Varekamp I, de Vries G, Heutink A, van Dijk F (2008) Empowering employees with chronic diseases; development of an intervention aimed at job retention and design of a randomised controlled trial. BMC Health Serv Res 8:224Google Scholar
  26. 26.
    Verdier-Tailler MH, Sazdovitch V, Borgel F, Cesaro P, Kurtz A, Millet MF, Roullet E, Marteau R (1995) Occupational environment as risk factor for unemployment in multiple sclerosis. Acta Neurol Scand 92:59–62CrossRefGoogle Scholar

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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