A Reproductive Life Plan for women with Systemic Lupus Erythematosus: development and evaluation of user experiences

Having children is an important life goal for most women and many rate it as their most important life role. Female patients suffering from systemic lupus erythematosus (SLE) are confronted with the fact that SLE pregnancies are high-risk pregnancies and management of this increased risk requires adequate contraception, pregnancy planning and specialized follow-up by a rheumatologist and an expert obstetrician. Guidelines on the medical management of family planning in women with SLE exist, but hands-on guidance for discussing the broad theme of family planning with the patient is lacking. In this project, we aim to develop and test a Reproductive Life Plan for women with Systemic Lupus Erythematosus (RPL for SLE). We will first develop a prototype RPL for SLE, that consists of a discussion guide (to guide the conversation/consultation between rheumatologist and patient when addressing the topic family planning) and of additional eHealth patient information in the form of a smartphone-friendly website (via link or QR code) that can be consulted by women from wherever they are, whenever they wish. Second, we will test this prototype RLP for SLE in 20 female SLE patients. After the consultation, in which the rheumatologist follows and introduces the newly developed RLP for SLE, the patients will be interviewed to evaluate their ideas and perceptions on the discussion and the eHealth tools. Based on these interviews, the RLP will be adapted to meet the patient’s expectations and needs. Finally, we will address a number of Belgian rheumatologists, nurses and patient representatives, to evaluate their ideas on importance & feasibility of our RLP for SLE. This project will result in a RLP for SLE, including a discussion guide and additional eHealth information that are positively experienced by patients and care givers, and that will be made publicly available. We believe this is an important first phase to increase the patientcenteredness of care and increasing women’s quality of life in women with SLE in the choice for and planning of pregnancies