The impact of systemic lupus erythematosus on pregnancy and work participation

The aim of this thesis is to investigate the impact of systemic lupus erythematosus (SLE) on two ‘life topics’: pregnancy (planning) and work participation. SLE is a systemic inflammatory auto-immune disease which is most often diagnosed in young adults and as such, SLE may have a major impact on these life topics. Part I: SLE and pregnancy Chapter 2 presents the results of a systematic review and meta-analysis on the incidence of spontaneous and indicated preterm birth (<37 weeks of gestation) in women with SLE. The results of this review demonstrate that both spontaneous and indicated preterm birth rates are high in pregnant women with SLE. Further research is needed to investigate which interventions can reduce spontaneous preterm birth in women with SLE. In chapter 3, disease activity before, during and after pregnancy and pregnancy outcomes in first and consecutive pregnancies were studied retrospectively in a Dutch bi-center tertiary cohort of women with SLE. This study showed a high incidence of maternal and perinatal pregnancy complications, despite low disease activity before, during and after pregnancy. This information is useful for pregnancy counselling of women with SLE. The treatment practices regarding the prescription of aspirin and low molecular weight heparin (LMWH) in women with SLE and/or antiphospholipid syndrome (APS) are described in chapter 4. This retrospective bi-center tertiary cohort study, included pregnancies of women with SLE primary APS. This study shows pregnancy complications were frequent irrespective of the treatment group. In chapter 5, the results of a questionnaire on the desire to have children and preferences regarding pre-pregnancy counselling in women with SLE are reported. In 31% of cases childlessness was attributed to SLE. Half of the women preferred the first pre-pregnancy counselling immediately after diagnosis, together with their partners and given by health-care providers. This study underlines that timely and tailored pre-conceptional counselling by healthcare providers is very important. In chapter 6, we investigated if subcutaneously administered belimumab is transferred to breastmilk. This case report confirms the transfer to breastmilk. The concentrations measured in breast milk were much lower than those measured in serum of adult patients. Data on infant serum levels are not available and urgently needed in order to be able to weigh the possible risk of transfer of belimumab to the infant against the positive effects of breastfeeding for mother and child. Part II: SLE, pregnancy and work participation In chapter 7 work participation during and after pregnancy was studied in pregnant employed women with SLE and pregnant employed matched controls. Controls more often continued working during pregnancy. No difference in timing of return to work after maternity leave was found. These findings warrant improved counselling of women with SLE planning a pregnancy as well as increased attention from healthcare providers for medical problems which might impair continuing work in women with SLE. Part III: SLE, pregnancy and work participation Chapter 8 presents a systematic review of studies reporting on associations or predictors of work participation in patients with SLE. Factors associated with or predicting (un)favorable work participation outcome were not only demographic and disease related characteristics, but also work characteristics including physical functioning, physical job demands and cognitive functioning were important. Chapter 9 describes a longitudinal cohort study in SLE patients with regard to employment status and the associated demographic, disease-related and work characteristics. This study shows that alongside demographic and disease-related characteristics, also work characteristics are associated with having and maintaining paid work in patients with SLE. These work characteristics should be taken into consideration when developing interventions to improve sustainable employability in patients with SLE.