PT - JOURNAL ARTICLE AU - Chiara Tani AU - Dina Zucchi AU - Elisa Bellis AU - Mehret Birru Talabi AU - Charlotte Frise AU - Guilherme Ramires de Jesús AU - Hege Svean Koksvik AU - Gema Maria Lledó AU - Arsène Mekinian AU - Diana Marinello AU - Ilaria Palla AU - Puja Mehta AU - Luis Sáez Comet AU - Shoela Shaimaa AU - Hieronymus T.W. Smeele AU - Rosaria Talarico AU - Antonio Brucato AU - Munther Khamashta AU - Yehuda Shoenfeld AU - Angela Tincani AU - Marta Mosca TI - Patient care pathways for pregnancy in rare and complex rheumatic diseases: results from an international survey AID - 10.3899/jrheum.220773 DP - 2023 Jan 15 TA - The Journal of Rheumatology PG - jrheum.220773 4099 - http://www.jrheum.org/content/early/2023/01/10/jrheum.220773.short 4100 - http://www.jrheum.org/content/early/2023/01/10/jrheum.220773.full AB - Objective To map existing organizational care pathways in clinical centers of expertise that care for pregnant women affected by rare and complex connective tissue diseases (rcCTDs). Methods An international working group composed of experts in the field of pregnancy in rcCTDs co-designed a survey focused on organizational aspects related to the patient's pathway before, during and after pregnancy. The survey was deployed to subject experts via referral sampling. Results Answers were collected from 69 centers in 21 countries. Patients with systemic lupus erythematosus and/or antiphospholipid syndrome were followed by more than 90% of centers, while diseases such as IgG4-related diseases were rarely covered. In the majority of centers, a multidisciplinary team was involved, including an obstetrician/gynaecologist in 91.3% of cases and other healthcare professionals less frequently. Respondents indicated that 96.0% of the centers provided routine pre-pregnancy care, while the number of patient visits during pregnancy varied across centers. A formalized care-pathway was described in 49.2% of centers, and 20.3% of centers had a pre-defined protocol for the monitoring of pregnant patients. Access to therapies during pregnancy also was heterogeneous among different centers. Conclusion In international referral centers, a high level of care is provided to patients with rcCTDs before, during and after pregnancy. No significant discrepancies were found between European and non-European countries. However, this work highlights a potential benefit to streamline the care approaches across countries in order to optimize pregnancy and perinatal outcomes among patients with rcCTDs.