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

## TL;DR

This study explores how women with Sjögren's disease experience their quality of life during pregnancy, finding generally high and stable well-being with minimal pain.

## Contribution

The study provides novel insights into HRQoL in pregnant women with Sjögren's disease using a nationwide registry.

## Key findings

- Women with Sjögren's disease reported high HRQoL and low pain levels during pregnancy.
- HRQoL scores remained stable across trimesters, though physical functioning declined in the third trimester.
- Adverse pregnancy outcomes like pre-eclampsia and premature birth were not prominent in this group.

## Abstract

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.

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.

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.

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.