Background: Women with systemic lupus erythematosus (SLE) often face challenges in family planning and pregnancy. EULAR guidelines recommend early and ongoing multidisciplinary care to manage these complexities [1, 2].

Objectives: To explore patient experiences with pre-conception, pregnancy, and postpartum care for women with lupus in Europe.

Methods: As part of the Lupus Europe Living with Lupus 2024 survey programme, seven targeted questions were designed to explore the experiences and perspectives of European women with lupus of childbearing age who were either young mothers (with children under the age of four years) or planning a pregnancy within the next two years. Out of 1881 respondents who identified as women of childbearing age, 453 with a median age of 35.2 years±6.0) completed this section of the survey. Their responses were analysed to evaluate experiences with family planning discussions, the extent of collaboration between healthcare providers, and trust in medical professionals during pregnancy.

Results: Among respondents, 31.3% (n=131) reported that their lupus doctor never or almost never initiated discussions about family planning, while another 30.9% (n=129) indicated they had to initiate these conversations themselves. However, 73.3% of respondents (n=297) discussed pregnancy with a lupus specialist before conceiving. Despite these consultations, many participants felt inadequately informed: 30.3% felt underinformed about managing lupus when planning for pregnancy, 33.6% lacked sufficient information during pregnancy, and 45.7% felt underinformed about lupus management in the postpartum period. When asked about trust in healthcare professionals, 50.2% (n=218) of respondents said they trusted their obstetrician/gynaecologist most to manage their health and their baby’s health during pregnancy, while 32.3% (n=140) trusted their rheumatologist most. Interestingly, respondents rated their rheumatologist as more knowledgeable about pregnancy-related issues (58% rating 4 or 5 on a scale of 1 to 5) and pregnancy specific lupus questions concerns (58%) compared to obstetricians/gynaecologists, who scored lower at 41% for Lupus knowledge and 46% for lupus specific pregnancy questions. Collaboration between healthcare providers was limited: 56.7% (n= 232) of respondents were either unaware of or reported no collaboration between their rheumatologist and obstetrician/gynaecologist. Only 17.4% (n=72) stated that the two specialists regularly collaborated, either through regular communication (6.3%) (n=26) or as part of a multidisciplinary team (11.1%, n=46).

Conclusion: Despite EULAR guidelines recommending that family planning discussions begin early and continue throughout, significant gaps remain in the patient experience of family planning, pregnancy and postpartum care among women with lupus in Europe. A significant proportion feels insufficiently informed about their lupus management pre-conception, during pregnancy and in the postpartum period. Furthermore, most patients do not experience collaboration between their gynaecologist/obstetrician and rheumatologist. Addressing these gaps is critical to improving outcomes for women with lupus and their families.

REFERENCES: [1] Andreoli L, Bertsias GK, Agmon-Levin N et al. (2017), EULAR recommendations for women’s health and the management of family planning, assisted reproduction, pregnancy and menopause in patients with systemic lupus erythematosus and/or antiphospholipid syndrome. Ann Rheum Dis .;76(3):476-485. doi: 10.1136/annrheumdis-2016-209770

[2] Förger F, Pluma Sanjurjo A, Rüegg L , et al , (2024) AB1439 update of the EULAR points to consider for use of antirheumatic drugs in reproduction, pregnancy and lactation, Annals of the Rheumatic Diseases ; 83: 2075-2076.

Acknowledgements: NIL.

Disclosure of Interests: Zoe Karakikla-Mitsakou: None declared , Alain Cornet: None declared , Francesca Marchiori: None declared , Lucy Scarle: None declared , Samantha Lachinaite: None declared , Lynette Bortey UCB, Cristiana Sieiro Santos: None declared .

© The Authors 2025. This abstract is an open access article published in Annals of Rheumatic Diseases under the CC BY-NC-ND license ( http://creativecommons.org/licenses/by-nc-nd/4.0/ ). Neither EULAR nor the publisher make any representation as to the accuracy of the content. The authors are solely responsible for the content in their abstract including accuracy of the facts, statements, results, conclusion, citing resources etc.