A prospective multicenter register study exploring health-related quality of life in women with Sjögren's disease during pregnancy

Objectives: Limited research has investigated health-related quality of life (HRQoL) in women with Sjögren's syndrome. Pregnancies in women with Sjögren's disease are considered high-risk, with potential adverse outcomes for both the fetus and the mother. This study aims to explore HRQoL in women with Sjögren's disease during pregnancy. Methods: This prospective multicenter registry study explored data from pregnant women with Sjögren's syndrome enrolled in the nationwide quality registry, RevNatus. Data were collected from January 2016 to September 2023 and included demographic information, self-reported responses from the RAND-12 questionnaire assessing HRQoL, and visual analogue scales (VAS) evaluating pain, fatigue, and overall disease burden. Results: In total, 62 women with 75 pregnancies were included. These women scored highly across most domains related to HRQoL and reported low levels of pain and other disease-related symptoms. There were few to no significant differences in RAND-12 and VAS scores between the trimesters. However, a pattern emerged in the third trimester, characterized by lower exercise rates, increased work withdrawal, and higher disease activity. Most women had received counselling regarding their diagnosis and pregnancy, and the majority were in remission. Adverse outcomes, such as pre-eclampsia and premature birth, were not prominent. Conclusion: Norwegian women with Sjögren's disease generally report high and stable HRQoL during pregnancy. Their experiences of pain and disease activity are minimal. However, they face challenges related to physical functioning and maintaining regular exercise as pregnancy progresses, an area that should be targeted in antenatal care.