SAT0642-HPR CAPTURING THE UNMET NEEDS OF WOMEN WITH SYSTEMIC LUPUS ERYTHEMATOSUS AND IDENTIFYING THE INFORMATION NEEDED IN PHYSICIAN-PATIENT COMMUNICATION
Authors: S. Shoela, A. Beltagy, F. Fayed, M. Morsy
Journal: Annals of the Rheumatic Diseases (2020)

Background: Systemic lupus erythematosus (SLE) is known to affect the reproductive health of female patients in various ways. Identifying the unmet information and needs of women with SLE about the impact of the disease on maternal health, pregnancy, family planning and contraception is of paramount importance. Objectives: Our aim was to understand the information needs of women with SLE and capture the gaps in the knowledge of reproductive issues. Methods: We interviewed 284 female patients with SLE in three centers all affiliated to Alexandria Faculty of Medicine, using a 41 multiple-choice based questionnaire about pregnancy counselling, contraception and the use of drugs during pregnancy. The disease knowledge index (DKI) created by Andreoli et el.,(1) was applied to assess the global knowledge and information of patients on the impact of SLE on reproductive health. Results: Forty percent of patients declared to have performed the last gynecological visit since 3 years, versus (49.3 %) patients who have done their last visit within a year. 255 patients reported to have received counselling about contraception; 141 of which provided by gynecologists and not rheumatologists. 114 (40.1%) patients have never been asked about the desire to have children. Regarding the methods of contraception used, 104 (36.6%) patients stated that they don’t know there are different forms of pills and have never heard of the progestin-only pills. As for the DKI, patients showed proper knowledge about the possibility for SLE women to fall pregnant, have healthy children and the fact that lupus flares up during pregnancy. 118 (41.5%)of the patients didn’t know whether children of women with SLE carry a higher risk of having general health problems or not. Also, a great proportion of patients chose “do not know” for the possibility that children could inherit the mother’s disease (49.6%). Concerning the drugs used during pregnancy, surprisingly, (34.2%) patients stated that Hydroquinone shouldn’t be used during pregnancy, and (28.9%) didn’t know if it is compatible with pregnancy or not. Nearly half the patients who were interviewed didn’t know that Methotrexate, Cyclophosphamide and Mycophenolate mofetil are contraindicated in pregnancy. About 80% of the patients stated that SLE influenced the number of the family size they desired in various ways and 134 (47.2%) patients blamed the disease for not being able to take care of their children. Expectedly, SLE impacted patients’ marriages in different forms; 27 (9.5%) of the patients claimed that the disease led to their divorce, 52 (18.3%) explained that their spouses constantly complained about their illnesses, and 19 (6.7%) refused to answer this question. A total of 181 (63.7%) patients had spontaneous abortions, among which 181 (63.7%) patients before being diagnosed with SLE, and 134 (74%) of these abortions occurred in the first trimester. Conclusion: There is a crucial unmet need for women with SLE, identified as a wide gap in communication about reproductive issues. This is influenced by the quality of physician-patient communication, as well as rheumatologist-obstetrician communication. References: [1]Andreoli L, Lazzaroni MG, Carini C, Dall’Ara F, Nalli C, Reggia R, et al. “Disease knowledge index” and perspectives on reproductive issues: A nationwide study on 398 women with autoimmune rheumatic diseases. Joint, bone, spine: revue du rhumatisme. 2019;86(4):475-81. Acknowledgments: I wish to express my deepest gratitude to Dr.Laura Andreoli and her colleagues for allowing us to use their questionnaire in our study. Disclosure of Interests: None declared