Background/Purpose: Maternal exposure to mycophenolate mofetil (MMF) during pregnancy is associated with increased risks of first trimester pregnancy loss and congenital malformations. Responding to this observation, the Food and Drug Administration (FDA) mandated a risk evaluation and mitigation strategy (REMS) for MMF in October 2012. MMF is currently used to treat a variety of conditions including systemic lupus erythematosus (SLE) and lupus nephritis.  The HSS SLE-APS Center of Excellence (COE) serves a large number of female patients of child-bearing potential. Based on these facts, we developed a survey to better understand the reproductive counseling needs of our cohort. The objectives were: a) To understand SLE patients’ pregnancy intentions and assess their current patterns of contraceptive use. b) To assess the level of contraceptive and reproductive counseling offered by the HSS SLE-APS COE and determine the need for and patient interest in contraceptive and reproductive patient education.

Methods: An anonymous, 9-question paper survey was offered to patients of the HSS SLE-APS COE from December 2010 to September 2011. Survey questions assessed attitudes about pregnancy, patterns and type of contraceptive use, prior pregnancy and contraceptive counseling by healthcare providers, and patients’ interest in participating in new reproductive health educational programs offered by the COE.

Results: Sixty-six patients completed the survey; 53 (80%) were female. 23 (35%) patients could recall a discussion with COE healthcare providers regarding contraceptive use; 22 (33%) remembered such a conversation about pregnancy.  56% were interested in participating in a contraception class and 53% were interested in a pregnancy class. (Table 1)

Conclusion: Our survey demonstrated a striking deficiency in recall of contraceptive and reproductive counseling by patients in our COE. Over half of survey participants were interested in a formal educational program on these topics. Based on data from this survey and the FDA’s mandate, the SLE-APS Center of excelence now offers a personalized, one-on-one, patient education session taught by a registered nurse for SLE patients taking MMF. Similar sessions for patients receiving cyclophosphamide, methotrexate, and azathioprine are being developed.

Table 1

Pregnancy Intentions (n=66)

            Pregnant                                               4 (6%)

Trying to become pregnant                    4 (6%)

            Wouldn’t mind becoming pregnant        13 (20%)

            Trying to avoid pregnancy                     29 (44%)

            Not possible to become pregnant          18 (27%)

            Haven’t considered pregnancy  2 (3%)

Contraceptive use (n=66)

            Never                                                   13 (20%)

            Rarely                                                  6 (9%)

            Sometimes                                            11 (17%)

            Most of the time                                   8 (12%)

            Always                                                 14 (21%)

            Not applicable                                      14 (21%)

Contraceptive type (n=34)

            None                                                    56 %

            Barrier                                                  35%

            Estrogen/progesterone pill                     3%

            Progesterone only pill                            3%

            Progesterone injection                           3%

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/reproductive-counseling-program-for-lupus-patients-at-the-systemic-lupus-erythematosus-antiphospholipid-syndrome-center-of-excellence-at-hospital-for-special-surgery/