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Objectives Pre-pregnancy counselling in women with systemic lupus erythematosus (SLE) is important in order to improve knowledge on the risks of pregnancy and to optimize pregnancy outcomes. Knowledge on the preferences of women with SLE regarding pre-pregnancy counselling have not yet been studied. In a closely monitored cohort of women with SLE we enquired about the present status of their wish to have children, and wish for and experiences with pre-pregnancy counselling. Methods A questionnaire developed by physicians in collaboration with two women with SLE was sent to all (n = 177) women participating in the Amsterdam SLE cohort. The questionnaire comprised 32 items, of which 15 focused on the above-mentioned three themes. Results A total of 124 women (70%) returned the questionnaire. The median disease duration was 13 years (interquartile range 9–19). Childlessness occurred in 51 women and 31% declared this was due to SLE [conscious decision (21%), stringent medical advice (6%), infertility due to medication (4%)]. Half of the women preferred the first pre-pregnancy counselling immediately after the SLE diagnosis (53%), together with their partner (69%). Information given by healthcare providers (81%) was preferred over information provided via brochures (35%) or the internet (26%). Pre-pregnancy face-to-face counselling from a rheumatologist and/or gynaecologist separately was preferred in 54%. Conclusion One-third of women attributed their childlessness to SLE-related reasons. Pre-pregnancy counselling was preferred shortly after the onset of the disease in a non-multidisciplinary setting. The results of this study underline the importance of timely pre-conceptional counselling by healthcare providers on fertility, risks and pregnancy outcomes in women with SLE.

Desire to have children and preferences regarding to pre-pregnancy counselling in women with SLE