By Dr. Katie Morrisroe

The ability to work is a fundamental component of everyday life. Work loss is one of the most important consequences of chronic rheumatic diseases, such as systemic sclerosis (also known as scleroderma). 

Systemic sclerosis can impact work in several ways. It can mean that the individual cannot maintain work in their current roles because of their condition, resulting in unemployment, or it can cause work disability or work status restriction through absenteeism (extended periods of sick leave), and/or a reduction in productivity while present at work (presenteeism). 

Work loss impacts individuals, families and society at large. For individuals, work loss can not only result in a loss of income, but it can also affect their sense of wellbeing, satisfaction, and quality of life. Studies have indicated that working is one of the most important activities of daily living, providing an income, daily structure, social interaction, and an opportunity to learn and develop new skills. At the societal level, work loss can result in significant economic costs. Therefore, understanding the prevalence and nature of unemployment or work disability in systemic sclerosis is imperative to establishing health interventions which enable individuals to remain in the workforce for as long as they wish. 

To further understand unemployment and work disability in individuals with systemic sclerosis in Australia, we performed a cross-sectional study by circulating several employment related questionnaires in those enrolled in the Australian Scleroderma Cohort Study. We found 19.9% of working aged individuals with systemic sclerosis in our surveyed population were unemployed. Of concern was the young age of those reporting unemployment, with a mean age of unemployment of 51 years, which is at least ten years below the average age of retirement as reported by the Australian Bureau of Statistics. Factors independently associated with unemployment included the diffuse disease subtype; a physical job; and the presence of pulmonary arterial hypertension, sicca symptoms (dry eyes and dry mouth) and digital amputation. Furthermore, we found unemployment was associated with poorer physical function and health related quality of life scores (1). Of those that were employed, we then evaluated the frequency of work status restriction by measuring absenteeism and presenteeism. Our study results found that 16% of those employed had experienced absenteeism (missing work due to their condition) in the last week, accounting for over a third of their working week (32.9%), and over two-thirds reported presenteeism (being present at work but not working to their full capacity due to their condition). As for unemployment, those that reported work restrictions due to their systemic sclerosis also reported lower quality of life scores compared to those who did not experience workplace restrictions (2). In addition to the impact that unemployment and work restriction has on the individual, it is associated with a significant individual annual economic cost of AUD$67,595. 

Overall, our study results show that systemic sclerosis is associated with a significant impact on work through both unemployment and work restriction for those in employment, which in turn has a negative impact on quality of life. Factors identified through these surveys which would be helpful for maintaining employment included workplace adjustments, reducing working hours and modifying the work environment (with reference to heating and air conditioning). Understanding the risk factors associated with work disability and further exploring obstacles encountered by individuals with systemic sclerosis would enable the development of health interventions and educational resources for employers with the aim of enabling those with systemic sclerosis to remain in the workforce for as long as they wish. 

References

1. Morrisroe K, Huq M, Stevens W, Rabusa C, Proudman SM, Nikpour M. Determinants of unemployment amongst Australian systemic sclerosis patients: results from a multicentre cohort study. Clin Exp Rheumatol. 2016;34 Suppl 100(5):79-84.
2. Morrisroe K, Sudararajan V, Stevens W, Sahhar J, Zochling J, Roddy J, et al. Work productivity in systemic sclerosis, its economic burden and association with health-related quality of life. Rheumatology (Oxford). 2018;57(1):73-83.