Patient perspectives on SLE, refractory APS, and biologic drug use during pregnancy

PurposeWomen with Systemic Lupus Erythematosus (SLE) and/or Antiphospholipid Syndrome (APS) have an increased risk of pregnancy complications. This study explored their perspectives on pregnancy, pregnancy complications, and medication use during pregnancy.MethodsIn collaboration with the Dutch National Patient Association for Lupus Erythematosus, an online questionnaire was developed and distributed among female members. The questionnaire presented eight potential pregnancy complication scenarios. Respondents indicated whether they found the standard medication regime sufficient and their willingness to take additional medication. They also assessed which side effects of biological therapies would discourage additional treatment. The survey ran from November 18, 2023, to March 19, 2024.Major findingsOf 71 respondents (mean age 39), 42% had APS, 31% had SLE, and 27% had both. A majority (79%) would endure pregnancy complications, such as SLE flare or pre-eclampsia, if it meant a live-born baby. Willingness to use additional medication varied by scenario (51%–89%) depending on the specific complication at risk. Most side effects associated with the use of biologicals were deemed acceptable by the majority of respondents. However, a slight majority indicated they would refrain from additional medication if it led to an increased risk of infections such as urinary tract infections or pneumonia.ConclusionMost women would accept adverse obstetric outcomes or maternal complications as long as pregnancy results in a live birth. The majority of respondents consistently expressed a desire for additional medication to reduce the risk of complications during pregnancy, regardless of the specific complication at hand.