Pregnancy-related issues from the perspective of patients with inflammatory rheumatic diseases – Results from a survey of the members of the National Association for Inflammatory Rheumatic Diseases

Abstract

ABSTRACT Objectives This study aimed to clarify the issues related to pregnancy in patients with inflammatory rheumatic diseases (RDs) and to provide useful information for developing medical services from patients’ perspectives. Methods A survey involving approximately 5000 members of the Patients Association for Collagen Vascular Diseases Japan was conducted using a questionnaire that was sent and returned by mail. The questionnaire items included age at the time of the survey, types of RDs, association of RDs with pregnancy/childbirth outcomes, and pregnancy-related supports and hindrances. Results We received 491 completed questionnaires. The most common RD was systemic lupus erythematosus (n = 309). Approximately 60% of participants had a history of childbirth. Approximately 60% of participants had previously experienced pregnancy-related challenges due to RDs. These included concerns about the influence of drugs on babies, genetic transmission, and active disease. Patients with active disease at the time of conception were more likely to experience disease exacerbation during pregnancy, but this did not correlate with whether the pregnancy was planned. Conclusion This study revealed that many patients with RDs experienced pregnancy-related challenges and needed appropriate support based on appropriate information. The findings here should help rheumatologists, healthcare providers, and public agencies provide counselling and information.