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

Abstract

ObjectiveTo map existing organizational care pathways in clinical centers of expertise that care for pregnant women affected by rare and complex connective tissue diseases (rcCTDs).MethodsAn 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.ResultsAnswers 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.ConclusionIn 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.

Optimizing Care for Pregnancy in Rheumatic Diseases: Barriers and Potential Solutions

“…[1][2][3][4] In this issue of The Journal of Rheumatology, a multicenter survey by Tani et al on patient care pathways in pregnant women with rare and complex connective tissue disease is an important step in attempting to map existing care pathways. 5 Data were collected from 69 centers across 21 countries. Ninety-one percent of centers provided services to pregnant women with RD by a multidisciplinary team (MDT) that included gynecologists/obstetricians (though formalized inclusion of other disciplines was present only in 30% of centers).…”

“…Notwithstanding a lack of generalizability arising mainly out of the involvement of far more centers based in Europe (54 out of 69 centers, with 27 from Italy) and a sampling bias due to survey respondents mostly being specialists in reproductive rheumatology, the present study does hold up a mirror in front of us with regard to providing optimum care for pregnancy in RDs. 5 Clinical care pathway (CCP) is defined as a "complex intervention for the mutual decision making and organization of care processes for a well-defined group of patients during a well-defined period." 6 A customized CCP is a potential tool to minimize errors and promote standard evidence-based practices in the context of pregnancy and RDs.…”

“…9 The study by Tani et al has attempted to map existing CCPs in reproductive rheumatology, achieving partial fulfillment of the first step of the RarERN path. 5 Further steps would be mapping existing patient stories, designing an optimized common CCP, reaching a consensus on an optimized CCP, defining the key performance indicators and instructions for application in specific healthcare contexts, refining the CCP, and launching a pilot phase to assess the applicability and adaptability of the CCP. 9 In this editorial, we have discussed major barriers and solutions to optimize care for pregnant patients with RDs.…”