RT Journal Article
SR Electronic
T1 Patient Care Pathways for Pregnancy in Rare and Complex Rheumatic Diseases: Results From an International Survey
JF The Journal of Rheumatology
JO J Rheumatol
FD The Journal of Rheumatology
SP 934
OP 938
DO 10.3899/jrheum.220773
VO 50
IS 7
A1 Tani, Chiara
A1 Zucchi, Dina
A1 Bellis, Elisa
A1 Birru Talabi, Mehret
A1 Frise, Charlotte
A1 de Jesús, Guilherme Ramires
A1 Koksvik, Hege Svean
A1 Lledó, Gema Maria
A1 Mekinian, Arsène
A1 Marinello, Diana
A1 Palla, Ilaria
A1 Mehta, Puja
A1 Comet, Luis Sáez
A1 Shaimaa, Shoela
A1 Smeele, Hieronymus T.W.
A1 Talarico, Rosaria
A1 Brucato, Antonio
A1 Khamashta, Munther
A1 Shoenfeld, Yehuda
A1 Tincani, Angela
A1 Mosca, Marta
YR 2023
UL http://www.jrheum.org/content/50/7/934.abstract
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 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.