Comparing Symptoms and Quality of Life Indicators of Individuals with Multiple Sclerosis to U.S. General Population Norms and by Employment Status
414 adults with multiple sclerosis (MS) reported on employment status, work preference, symptoms, and quality of life indicators (QoL). 62% of participants were unemployed, but preferred to be working. This group reported worse functioning on most QoL and symptom measures than other employment groups.
Background: People with multiple sclerosis (MS) face high unemployment rates. MS symptoms are a significant barrier for many people with MS to finding and maintaining employment. However, the symptoms have not been extensively studied in relation to employment partly because of lack of common metrics across measures. The NIH-funded PROMIS initiative used modern psychometric methods to develop instruments for many important domains that are on the same metric and provide US population norms. The objective of the current study was to construct profiles of symptoms and QoL indicators in persons with MS and to compare them to US population norms and by employment status.
Methods: PROMIS measures of symptoms or QoL indicators (fatigue, pain, physical and social function, depression, anxiety, and sleep disturbance) and Neuro-QOL measures of executive functioning and general cognitive concerns were completed via telephone by 414 adults with MS. A targeted sampling plan was used to enroll under-represented groups including those living in a rural area, with progressive MS, men, and those under age 30. Employment status, work preference, and demographics were also collected. T-scores were compared to US population norms and by employment status group (employed, unemployed/prefer not to work and unemployed/prefer to work).
Results: Compared to the US general population, individuals with MS reported a higher symptom burden and poorer QoL on all measures (all p<0.0001). Statistically significant differences from population means ranged from a low of 2.3 points (sleep disturbance) to a high of 9.2 points (fatigue) (T-score metric with a mean of 50 and SD of 10). Most respondents were not employed (70%) and only 14% were actively seeking work. Of those unemployed, 62% preferred to be working, but most were unable to work because of MS symptoms (79%). This group reported significantly lower household income than the unemployed and prefer not to work “retired” and employed groups (p<0.0001) andwere younger than individuals who preferred to not work, but older than employed individuals (p<0.0001). The unemployed/prefer to work group reported worse functioning on all QoL and symptom measures than the employed group and more fatigue, depression, anxiety, sleep disturbance, and worse social functioning than the prefer no work group (all p<0.05).
Conclusions: Results clearly quatify more symptoms and worse QoL for people with MS compared to the general population. Those unemployed with MS who prefer to be working report the highest symptom burden. This group is generally younger and may feel that they should be working, but are unable to do so because of MS symptoms. They may also be financially stressed which may have further impact on QoL indicatorsIndividuals who are unemployed and seeking assistance returning to work will profit from an interdisciplinary, in depth consultation about factors, including psychological distress, that they may want to address.