This prospective study found that level of disability and education was predictive of loss of employment 2.5 years later. We did not find evidence that self-reported cognitive function, depression or pain were associated with employment loss over this period although there was weak evidence to suggest that fatigue may play a role. Most participants reported that MS had negatively impacted their career, either through loss of employment, increased sick leave or lack of career progression, despite the majority of participants reporting no or mild mobility disability. Retirement due to medical or disability reasons was associated with a significant decrease in mental health related QOL, adjusting for other clinical characteristics.
The majority of PwMS in our study were employed; 61.4% at baseline and 57.1% at follow-up, with approximately a quarter retired due to disability. Similarly, Fantoni-Quinton et al. report that 68% of their 941 online survey respondents were employed and 27% had retired due to MS [3]. More people lost rather than gained employment, with 4.3% fewer people employed at follow-up 2.5 years later. This is comparable to the 5.4% over 4 years in a similar Australian study [7]. A study from a North American MS cohort (NARCOMS), which included people only slightly older but with on average much longer disease duration than ours, reported that 40% of the sample was employed, and 6% lost employment over a period of 18 months [26].
Our results showed that both lower level of education and progressive type of MS at time of diagnosis were predictive of impact on future employment (over course of illness), but no associations were found with sex or age at diagnosis. Similarly, level of education and level of disability at study baseline (on average 6.5 years since diagnosis) predicted loss of employment 2.5 years later. We did not find evidence that sex, self-reported cognitive function, depression or pain were associated with employment loss 2.5 years later, and the evidence for fatigue and age was weak. This is in line with a recent meta-analysis including 25 (mostly cross-sectional) studies reporting a key role of relapsing–remitting disease course and higher education and, to a lesser extent, fatigue, pain, disease duration and age, on employment status [13].
Honarmand et al. found that unemployment in PwMS was associated with depression severity [27]. We did not find an association between depression and employment loss, but a difference in how this was operationalized may explain this discrepancy. Employment loss in their study was operationalized as unemployment, whereas we also included a change from full to part time work as employment loss. Interestingly, a study by Chiu et al. found that part-time employment was associated with lower levels of depression compared to full time and unemployment [28]. PwMS may choose to avoid stress, which is related to disease activity, by reducing workload or pressure [29]. This illustrates that associations between mental health and employment is a complex interplay and may include factors such as stress in trying to maintain work that may be beyond one’s capacity versus acceptance of alternatives.
Finally, to our knowledge, this is the first study to show prospectively that retiring due to disability was predictive of a decrease in mental health related QOL. It is common for PwMS to quit or lose their job at a specific disease “milestone” either after diagnosis, a relapse, or when entering the progressive phase of MS [30]. Therefore, it can be difficult to disentangle the effects of employment loss on QOL, when there are likely confounding factors. By examining within-person effects, fixed-effects models implicitly control for confounding by time-invariant characteristics, and we were able to control for a range of time-varying confounders, such as changes in MS characteristics. Therefore, our results indicate that employment loss impacts mental health related quality of life over and above the impact of clinical and other characteristics. People with MS who lose employment may need additional mental health assessment and supports at this time, as part of comprehensive care.
Type of employment, not captured in our data, is often related to level of education, and may influence how much flexibility there is in making workplace adjustments to accommodate symptoms. Factors in the work environment that may enable PwMS to stay in their job include flexible or reduced hours or workload when necessary [31], flexible deadlines, being able to take additional breaks or work from home [11]. Social and structural features to support PwMS to find or maintain adequate employment may include good access to health care, welfare provisions, antidiscrimination legislative protection, and vocational services [32]. Therefore, employment loss is likely caused by an interplay of MS-related factors as well as working environment and employer flexibility [30].
In addition to the detrimental effects of unwanted employment loss and early retirement to the mental and physical QOL and financial circumstances of PwMS and their families, there is a large economic disadvantage. Loss of productivity is now responsible for 32% of the costs of MS in Australia ($1.75 billion annually in 2017) [33]. Fortunately, this has reduced from 49% in 2010 [34], likely due to employers providing more work role and/or environment adjustments [35] and improvements in disease modifying therapies [36], enabling people to stay in employment longer. Assisting people to maintain employment will therefore benefit society, PwMS and their families. Playford suggests that employment status in MS may be regarded as a proxy for comprehensive MS management [37], and others have suggested employment as a rehabilitation or health promotion strategy [28]. While small improvements of employment status in PwMS have been reported globally, interventions specifically aimed at assisting PwMS to maintain employment are still not widely available [38]. As part of holistic MS care, people with MS should be offered assistance with understanding their rights, what employment services are available to them, and what reasonable workplace adjustments they can make or request.
Strengths and Limitations
This study included English-speaking volunteer participants, and those able to use a device on which to complete the online survey. People with severe vision, cognitive or dexterity impairment, or non-English speaking were unlikely to be included in this sample. Further, attrition was significant at 43.2% between baseline and 2.5 year follow-up, which was not at random, likely resulting in attrition bias [20]. As previously described, those who were lost to follow-up were at baseline more likely to have reported more severe disability, lower QOL, and were less likely to be employed [20]. These limitations may result in biased estimates and some associations may be less representative of the entire MS population. Further, self-report of information may not always be reliable, resulting in measurement error. There are inherent issues with assessing cognitive function with a self-reported questionnaire. Specifically in relation to health outcomes associated with employment loss, there is a possibility that unobserved confounders play a role [14]. We had a small proportion of males in the survey, hence we may not have had enough power to detect the impact of sex on employment loss.
It is likely that PwMS in employment are absent due to illness more often than those without MS [9], but absenteeism or presenteeism was not measured. The time frame of the study, 2.5 years, was relatively short to capture change and this resulted in a small sample size with change in employment status. We did not address the small sample (7.4%) in our study gaining employment, but suggest that future studies assess factors enabling PwMS to re-enter the workforce. While we captured retirement due to disability and retirement due to age, there may have been other reasons for retirement (by choice, lifestyle reasons, performance failure), or for working part-time (MS symptoms, carer responsibilities, or volunteering work) that were not captured in our study. Further, the effects may be different per country or job type, however, we were not able to investigate these differences.
One of the strengths of this study is that employment was not operationalized as a dichotomous variable as often done in similar studies which include students and carers as unemployed [13]. Rather we have categorised participants as full time, part time, unemployment or not in the work force. Further, the prospective nature of this study, and ability to adjust for a range of confounders further strengthens this study, and for the first time assess impact of job loss on mental health related QOL.