A 6-year prospective study on work participation and the associated factors in Dutch patients with systemic lupus erythematosus (SLE)

Abstract

Previous studies showed that many patients with SLE do not have paid work. However, having paid work is important for self-esteem, social contacts and income. It is therefore important to understand the characteristics contributing to work status and in particular identifying modifiable variables to help patients with SLE and their employers to maintain work. The objective of this study is to investigate associations of demographic, disease-related and work characteristics with having and maintaining paid work for ≥ 5 years in patients with SLE over a six-year period. All patients diagnosed with SLE, independent of disease duration and under treatment in Amsterdam UMC location VUmc or Reade were invited to participate in the longitudinal Amsterdam SLE cohort (2007–2018). Demographic, disease-related and work characteristics of these patients were analysed. Baseline was defined as the time of study entrance. Generalized Estimating Equations with logit link function were used to identify associations between these characteristics on having paid work. Logistic regression was used to study associations with maintenance of work and work disability. At baseline, 52% of patients (114/220) were employed, which decreased to 46% (73/157) after six years. The main reported reason for unemployment was because of SLE-related symptoms (63%). Among the 106 patients who were unemployed at baseline, 16% (17/106) gained work during follow-up of whom 47% (8/17) also maintained work. Of the 114 patients employed at baseline, 29% (33/114) remained employed throughout the entire six-year follow-up period. Having paid work over time was associated with younger age, higher level of education, shorter disease duration, lower organ damage and supervisor support. Maintaining employment for ≥ 5 years during follow-up was associated with regular working hours, skill discretion, decision authority and decision latitude. A longer disease duration was associated with work disability at baseline. This study shows that alongside demographic and disease-related characteristics, also work characteristics are associated with having and maintaining paid work in SLE patients. These characteristics should be taken into consideration when developing interventions to improve sustainable employability in patients with SLE. 1. The unemployment rate in SLE patients is high (54%) and increased over time during follow-up. 2. Maintaining work is associated with more supervisor support, regular working hours, skill discretion, decision authority, decision latitude. 3. Of the unemployed SLE patients at baseline, 16% started working of whom 47% maintained work.