Julian et al. Employment in multiple sclerosis. Exiting and re-entering the work force. J Neurol. 2008 Sep;255(9):1354-60.
Background: MS is associated with significant economic burden and high rates of unemployment.
Objectives: This study evaluated MS’ers and disease characteristics associated with work loss and work initiation using the NARCOMS patient registry.
Methods: MS’ers and disease characteristics associated with transitions to unemployment or employment were evaluated cross-sectionally and prospectively over the course of two assessment periods (mean interval of ~18 months). Eligible participants included 8,867 patients for the cross-sectional component, and 8,122 for longitudinal analyses.
Results: At Time 1 and Time 2 56-58 % of MS patients were not employed. At Time 1, unemployed participants more likely to have a progressive disease course, had a longer symptom duration, greater levels of disability as measured by the PDDS, and greater functional limitations across all domains of the performance scales (p < 0.0001 for all). At Time 2, increasing MS symptoms in the past 6 months increased the odds of becoming unemployed. In addition, specific problems in mobility, hand function, fatigue, and cognitive performance domains were associated with increased odds of becoming unemployed. Less severe problems in similar areas, including mobility, hand function, and cognitive functioning were also predictive of work initiation among patients not employed.
Conclusions: MS is associated with high rates of unemployment. Specific physical and mental health limitations confer risk of employment cessation over time, as well as the likelihood of employment initiation. This study has implications for rehabilitation interventions to target specific MS related limitations that place patients at greatest risk for work status changes.
“I have just come back from a meeting on measuring the impact of MS on people’s lives and what we need to measure to see if DMTs have a positive impact on MS’ers. One suggestion in view of the high rate of unemployment was to use employment rates as a crude index, or integrator, of health.”
“To get your head around this you need to view being employed as a positive. If DMTs keep people in work they must be doing something good. Although this may not apply to you as an individual it may affect NICE. NICE still do not take indirect costs into account when they assess the cost-effectiveness of DMTs for the NHS.”
in the current economic situation this will be impossible to measure. Civil Service departments are cutting headcount by c.30 per cent, banks are still making cuts and electrical stores are falling like flies. If MS was just one symptom employment wouldn't be such a major problem, but the combo of mobility, cognitive and fatigue make unemployment inevitable (unless you work for an MS society). We need to accept this – only repair will have any real impact.
Quality of life – speak to 30 of your patients. The quality of life at EDSS 9 is as low as it can be. I can't understand the obsession with trying to measure it. Imagine you were SPMS EDSS 6 like me – no more marathons / long walks, no more attendance at conferences, too tired to complete you papers, unable to get to work as tube too difficult. You could come up with a numerical scale e.g. 5.63, but it wouldn't mean much. I saw an interview at ECTRIMS who said that MS on average reduces life expectancy by 7-10 years, but the main issue was how it impacts on quality of life in the final 15-20 years of a patient's life. Let's only measure things we can improve – if you could reduce my EDSS to 3, the my QoL would improve.