OA12 Patient reported pregnancy outcomes and experiences in women with axial spondyloarthritis: preliminary results from a UK patient survey
Authors: Mootoo Amanda , Mouyis Maria , Farisogullari Bayram , Machado Pedro M , Webb Dale , Hamilton Jill , Clark Zoë , Marzo-Ortega Helena 
Published: April 2024

Background/Aims

Axial spondyloarthritis (axSpA) affects women of childbearing age and is associated with increased prevalence of pregnancy complications. There are limited UK data published on women with axSpA and pregnancy. We aimed to analyse the pregnancy outcomes and perspectives from women in the UK with axSpA who have been pregnant, with a particular focus on their access to support, flares, medication, and pregnancy complications.

Methods

An online patient survey was launched using RedCAP for women in the UK with axSpA who are or have been pregnant. The survey including 5 parts for details on: 1) general information and axSpA; 2) maternal; 3) pre-pregnancy; 4) pregnancy; 5) postpartum. The project was approved by UCL Research and Ethics Committee and endorsed by NASS and BRITSpA. Patients were recruited through the NASS and BRITSpA websites, social media platforms and e-mail. The survey collected anonymous data from February to June 2023. Descriptive statistical analysis was performed using Stata17.

Results

Among the 172 respondents, 89% were white, mean age was 44 years, 74% were HLA-B27 positive and 35%, 22% and 17% self-reported a history of uveitis, skin psoriasis and inflammatory bowel disease, respectively. This abstract focuses on data from the first pregnancy after axSpA diagnosis (n = 60, 35% of respondents). Not all questions were answered by participants and data are reported as a percentage of questions answered. Overall, 42% (20/40) reported a flare during their first pregnancy, of which 30% (6/20) contacted their obstetrician, 45% (9/20) contacted rheumatology and 40% (8/20) self-managed. 92% (52/60) of respondents say they planned pregnancy but only 32 (57%) had discussed pregnancy plans with rheumatology and only 26% were seen in a combined obstetric-rheumatology clinic. Regarding medications, 48% (24/50) felt comfortable with their medication regime during pregnancy, 55% stopped their biologic during pregnancy, and 3% started on a biologic. Regarding pregnancy outcomes, 45% had a natural delivery and 54% had caesarean section. 80% (48/60) of first pregnancies resulted in live birth and 16% (7/44) of respondents reported birth defects. Pregnancy complications were reported in 23% (11/48), of which 45% had pre-eclampsia (5/11), 27% had diabetes, 9% had eclampsia and, overall, 19% (9/47) had a self-reported infection. Regarding postpartum, 54% (25/46) had a flare after first delivery; average time to flare post-delivery was 5.4 weeks.

Conclusion

Preliminary results from UK-based patient survey provides essential insights into self-reported issues of women with axSpA and pregnancy. The study highlights the need for improvement in pre-pregnancy counselling and access, the increased risk of flares during pregnancy, and complications such as pre-eclampsia. Limitations include recall bias as it was a retrospective survey, being unable to clarify respondents' understanding, self-reported outcomes, and incomplete data capturing. Full analyses of the further pregnancies is planned.

Disclosure

A. Mootoo: None. M. Mouyis: Other; Speaking and advisory fees from UCB and Galapagos. B. Farisogullari: None. P.M. Machado: Consultancies; Consulting/speaker’s fees from Abbvie, BMS, Celgene, Eli Lilly, Janssen, MSD, Novartis, Orphazyme, Pfizer, Roche and UCB. D. Webb: None. J. Hamilton: None. Z. Clark: None. H. Marzo-Ortega: Honoraria; AbbVie, Biogen, Eli-Lilly, Janssen, Moonlake, Novartis, Pfizer, Takeda and UCB. Grants/research support; Janssen, Novartis and UCB.