Preconception, pregnancy and postpartum periods in spondyloarthritis: Unmet needs and challenges from a patients and rheumatologists surveys

OBJECTIVES: Pregnancy in women with spondyloarthritis (SpA) requires balancing disease control and maternal-fetal safety; national real-world data about real-life management are scarce. To describe management, information pathways, and perceived challenges for women with SpA, from both patient and rheumatologist perspectives. METHODS: Cross-sectional anonymous online surveys (patients and rheumatologists) were distributed December 20, 2024-April 15, 2025. Continuous variables are reported as median [IQR] and mean±SD; categorical variables as n (%). Analyses included respondents with complete or partially completed questionnaires. Ethical approval was obtained (Strasbourg Ethics Committee, 2 December 2024). RESULTS: In all, 147 patients and 167 rheumatologists completed surveys. PATIENTS: median age 40 [35-49]; 98.6% had regular rheumatology follow-up; 91.8% reported current need for drug therapy; 55.8% reported SpA impacted pregnancy planning; postpartum impact was reported by 80.5% with median symptom worsening 6.5/10. Knowledge gaps included biologic use in pregnancy and delivery mode. Rheumatologists: 100% agreed pregnancy is not discouraged in SpA; 62.8% considered disease course generally favourable during pregnancy; 92.9% had peripartum experience but reported lower comfort during pregnancy (median 7/10). Major challenges: diagnostic difficulty in pregnancy/postpartum and management of unplanned pregnancies under contraindicated treatments. Only 25.6% reported awareness of national/international pregnancy recommendations; the French Reference Center for Teratogenic Agents "Centre de Référence des Agents Tératogènes" (CRAT) website was rarely used. CONCLUSION: There is a clear information gap between patient needs and clinician counselling, and SpA diagnostic and care difficulties during preconception, pregnancy and postpartum periods. Structured preconception counselling, multidisciplinary pathways, and targeted clinician education (imaging timing, drug compatibility) are priorities.