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

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.

Multiple sclerosis in Canada 2011 to 2031: results of a microsimulation modelling study of epidemiological and economic impacts

“…8 Because onset of MS occurs at a relatively early age, it affects individuals during their most productive years, and they face challenges in the workforce including underemployment, unemployment and long-term disability. [9][10][11][12] According to the MS Society of Canada's Action on MS report, 13 nearly 80% of Canadians with MS may find themselves unemployed. Determining the reasons for the high prevalence and lessening the burden of living with MS and other chronic neurological conditions have become major health policy concerns in Canada.…”

Fatigability Assessment Using the Fatigue Index Kliniken Schmieder (FKS) Is Not Compromised by Depression

“…Fatigue is often experienced as the most disabling and limiting symptom, and greatly contributes to the degradation of general wellbeing, quality of life, and social participation [3] [4]. Moreover, the impact of fatigue at the workplace can be severe and frequently triggers early retirement, even in the early phases of the disease [5]. Despite its high socio-economic impact and its relevance for quality of life diagnostic criteria of fatigue are not well defined.…”

The employment concerns of Americans with multiple sclerosis: Perspectives from a national sample

“…If an accommodation is needed, the individual should follow the previously discussed thoughtful and skillful request strategy to minimize negative reactions. The proper accommodation should enable the individual to perform the essential functions of the position and resume acceptable levels of productivity, and Simmons et al [49] stressed the importance of "gradual accommodation of emergent symptoms in the workplace" (p. 934) as an effective job retention strategy. However, applicants or incumbents are under no obligation to disclose the presence of disability if they do not need an accommodation.…”

“…For this reason, Vickers [1, p. 194] recommended that employees with MS "wait to disclose until you have proven yourself to your employer." While that recommendation may apply in some situations, it also allows small problems to become large ones, thereby threatening the person's job security [49].…”