Patient-reported reproductive concerns and care needs among women with systemic lupus erythematosus: a descriptive qualitative study using patient journey mapping.

Abstract

To explore reproductive concerns and care needs across reproductive contexts among women with systemic lupus erythematosus (SLE) and develop a composite patient journey map. A descriptive qualitative study was conducted with 18 women purposively recruited from a tertiary hospital in Hefei, Anhui Province, China. Semi-structured interviews were analysed using Colaizzi's seven-step method and organised across four reproductive contexts and four mapping dimensions. Participants contributed only to contexts relevant to their reproductive histories. Reporting followed the Consolidated Criteria for Reporting Qualitative Research (COREQ). The composite journey map included four reproductive contexts and four dimensions: emotional experiences, behaviours, support resources, and key pain points. At diagnosis, women reported limited fertility-related information and uncertainty about future marriage and childbearing. During reproductive decision-making, they balanced perceived disease and medication risks with reproductive wishes, family expectations, caregiving resources, and financial capacity. During preconception and pregnancy, repeated monitoring, medication adjustment, and uncertainty about maternal and fetal safety were prominent. After childbirth, concerns centred on disease relapse, infant feeding, physical limitations, and combining treatment with childcare. Across these contexts, family involvement could provide emotional and practical support but could also create pressure. For some women, specific guidance on disease control, pregnancy timing, and medication adjustment was obtained only after they raised pregnancy plans. Reproductive concerns differed across reproductive contexts and involved pregnancy-related risks, family decision-making, practical constraints, and post-childbirth disease management and caregiving. The composite map may inform tailored reproductive communication, coordinated rheumatology-obstetric assessment, and postpartum support.