Abstract Background/Aims Systemic lupus erythematosus (SLE) predominantly affects females of reproductive age, who face increased risks of adverse pregnancy outcomes (APOs) and disease flare in pregnancy. Currently, prediction of APO and flare relies on the identification of clinical (e.g., presence of lupus nephritis, major organ involvement) and laboratory factors (e.g., rising CRP, falling complement, antiphospholipid antibody positivity). Whilst people with SLE are aware of heightened APO risk, their awareness that the occurrence of pre-eclampsia doubles the risk of future cardiovascular disease (CVD) in the general population is limited. Therefore, this study aimed to identify reproductive health research priorities and assess views on studying pregnancy-related predictors of long-term health. Methods An online survey was piloted and distributed in University College London Hospital clinic and Lupus UK social media channels (August-September 2025). Inclusion criteria were females aged 18-49 who were pregnant, previously pregnant or considering pregnancy. Analysis was via 5-point Likert scale (from Very important - Not very important). Results Ninety-one respondents with SLE (aged 18-49) met inclusion criteria; 70/91 (77%) had experienced pregnancy, and 21/91 (23%) were currently considering pregnancy. Participants ranked the importance of the following research topics to study:- Individual APO risk: 80/91 (88%) very important; 11/91(12%) as important.- The SLE-pregnancy interaction: 77/91 (85%) very important; 13/91 (14%) as important; 1/91 (1%) unsure.- The links between SLE activity and future risk of CVD: 74/91 (81%) very important; 15/91 (17%) as important; (2/91, 2%) unsure.- Accurate disease activity measurement in pregnancy: 72/91 (79%) as very important; 18/91 (20%) important; 1/91 (1%) unsure.- Quality of life (mental health, body image, work, social life): 60/91 (66%) very important; 27/91 (30%) important; 2/91 (2%) unsure; 2/91 (2%) unimportant.- Importantly, reception to testing cardiovascular health was high, with 88/91 (97%) willing to have an additional blood test in pregnancy if it could predict future cardiovascular risk and only 3/91 (3%) not willing. This response was identical to receptiveness for blood testing for research priorities such as predicting disease activity (88/91, 97%) and APOs (89/91, 98%) approving. Free Text Responses:- Of the 62 responses answering their most pressing research need, the most common grouped research themes were into why APOs occur (29/62, 47%), followed by specifically research into “risk prediction” in 23/62 (41%). Research into infant outcomes was the third most cited research need by patients (19/62, 31%), followed by miscarriage (14/62, 23%). Conclusion People with SLE strongly prioritise research into APO aetiology, biomarker-based risk prediction, infant health outcomes and exploring pregnancy’s link to future CVD through predictive non-invasive tests during pregnancy. These findings highlight an unmet need for improved APO and flare risk prediction, as well as validated patient-reported outcome measures to assess quality of life in pregnancy. Disclosure G.D. Woodward: Grants/research support; Lupus UK, National Institute for Health and Care Research University College London Hospitals Biomedical Research Centre. B. Goulden: Other; GSK funded talk on pregnancy. I. Giles: Honoraria; Honoraria from MGP as a coauthor on an educational review article in 2020 and speaker fees from UCB and has participated advisory boards for UCB. Grants/research support; I.G. received unrestricted research grants from UCB.
Woodward et al. (Wed,) studied this question.