Patient Care Pathways for Pregnancy in Rare and Complex Rheumatic Diseases: Results From an International Survey

Chiara Tani, Dina Zucchi, Elisa Bellis, Mehret Birru Talabi, Charlotte Frise, Guilherme Ramires de Jesús, Hege Svean Koksvik, Gema Maria Lledó, Arsène Mekinian, Diana Marinello, Ilaria Palla, Puja Mehta, Luis Sáez Comet, Shoela Shaimaa, Hieronymus T.W. Smeele, Rosaria Talarico, Antonio Brucato, Munther Khamashta, Yehuda Shoenfeld, Angela TincaniMarta Mosca*

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review


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 distributed to subject experts through 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, whereas those with disorders such as IgG4-related diseases were rarely covered. In the majority of centers, a multidisciplinary team was involved, including an obstetrician/gynecologist in 91.3% of cases and other healthcare professionals less frequently. Respondents indicated that 96% of the centers provided routine pre-pregnancy care, whereas 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 predefined 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 streamlining the care approaches across countries to optimize pregnancy and perinatal outcomes among patients with rcCTDs.

Original languageEnglish
Pages (from-to)934-938
Number of pages5
JournalJournal of Rheumatology
Issue number7
StatePublished - 1 Jul 2023
Externally publishedYes


  • complex diseases
  • pregnancy
  • rare diseases


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