ABSTRACT
OBJECTIVE: This study explored the reproductive journeys of women with vasculitis, including their conversations with healthcare providers, disease activity, medication changes, and delivery experiences. METHODS: Interviews were conducted with women registered in the Vasculitis Pregnancy Registry (VPREG), an online patient-reported registry of pregnant women with vasculitis. A team of physicians, patients, and qualitative researchers developed a qualitative interview guide. Participant responses were evaluated using thematic analysis. RESULTS: Eighteen patients with vasculitis who had experienced pregnancy were interviewed (10 antineutrophil cytoplasmic antibody-associated vasculitis, 4 Takayasu arteritis, 2 Behçet disease, 1 IgA vasculitis, 1 relapsing polychondritis). Thematic analysis revealed common experiences in the decision-making process during pregnancy planning, including accessing information from multiple sources, communicating with medical professionals, and changing treatment for vasculitis. Women sought information about vasculitis and pregnancy from various sources, including social media; however, opinions from their physicians and family members were most influential. Patients were more likely than providers to initiate conversations regarding family planning. Balancing differing opinions from subspecialists was challenging as many patients recalled acting as a liaison between multiple physicians during pregnancy. The need for self-advocacy was a common experience among patients. Most women had pregnancies that resulted in live births with delivery at term. CONCLUSION: When making decisions about pregnancy, women of reproductive age with vasculitis used multiple resources. Patients consistently valued their medical provider's opinion over alternative sources of information. To ensure comprehensive medical care, half of women relied on self-advocacy to coordinate communication among subspecialists. Most women had pregnancies that resulted in live births with delivery at term.
ABSTRACT
OBJECTIVE: There are limited data on the reproductive health of women with vasculitis. This study used a prospective, international vasculitis pregnancy registry to survey women during and after pregnancy. METHODS: The Vasculitis Pregnancy Registry (VPREG) is imbedded within the Vasculitis Patient-Powered Research Network, an international online research infrastructure. Any pregnant woman with a diagnosis of vasculitis can self-enroll. After enrollment, women are invited to complete online surveys at study entry, once per trimester, and postpartum. Descriptive statistics are reported here. RESULTS: Between 2015 and 2022, 147 women with 149 pregnancies enrolled in VPREG from 16 countries. Data on 78 pregnancies with known outcomes were included in this analysis. During pregnancy, women on average experienced low levels of pain related to vasculitis (scale 0-10, median 2 [IQR 1-5]) and preserved feelings of wellness (scale 0-10, median 3 [IQR 1-5]). Thirty-six percent of women reported their vasculitis was active during pregnancy. Of the 14 women requiring hospitalization during pregnancy outside of delivery, 4 cited active vasculitis as the indication. Most women (54/73, 74%) were prescribed medications for vasculitis during pregnancy. Seventy-six (97%) pregnancies resulted in live births, with 64% delivering vaginally and 21% experiencing a preterm delivery. CONCLUSION: These results demonstrate that most women with vasculitis can experience pregnancies that result in live births delivered at term. During pregnancy, a minority of women reported flares of vasculitis or the need for hospitalization due to vasculitis. These data are useful to rheumatologists and patients to inform and facilitate discussions about reproductive health and vasculitis.