Background/Purpose: Pregnancies in women with lupus who conceive when their disease is active or they are taking a teratogen are at increased risk for pregnancy loss, as well as preterm delivery and birth defects, with long-term consequences for their children.  To avoid potentially catastrophic outcomes, pregnancy should coincide with periods when disease quiescence can be maintained with pregnancy-compatible medications.  To achieve this, rheumatologists need to identify the women in need of pregnancy planning or contraceptive guidance.  Our goal is to assess the pregnancy planning and prevention needs within a university lupus clinic.

Methods: All study participants were enrolled in a prospective registry, met SLICC criteria for SLE, were female, and age 18 to 45.  On an intake form for each lupus clinic visit, women answered 1) “Would you like to get pregnant in the next 12 months,” and 2) contraceptive use and type.  Demographics, medications, and disease activity parameters were collected within the lupus registry.  Women who did not complete the survey were excluded from analysis. Fisher’s and t-tests compared women with and without contraceptive use and pregnancy intention.

Results: The survey was completed by 95% of the 134 women of reproductive age. Of these, 61% were black, 8% Hispanic, 46% were married and 64% had a college degree.

Contraception: 60% of women with lupus reported contraceptive use.  Of these, 44% were using highly effective contraception, including an IUD (n=20), implant (n=7), or surgical sterilization (n=7).  There were similar rates of contraceptive use by race, education, income, and marital status.  Contraceptive use did not differ by severity of lupus symptoms, with similar rates in women with and without proteinuria, and with or without active Type 1 or Type 2 SLE symptoms.

The rate of contraception use was higher among women taking a teratogen (76%) compared to those not taking a teratogen (49%, p=0.004).  While there was no difference in contraception use with or without HCQ, fewer women used contraception when taking AZA (30%, p< 0.001) and more women used contraception when taking MMF (77%, p=0.04).

Pregnancy Intention: 21 (17%) of women were interested in getting pregnant in the following year.  These women were just as likely to report using contraception (62%) as women not interested in pregnancy (58%).  There was no difference in demographic characteristics or lupus activity between women who did and did not want to conceive, though only one woman of 14 with active nephritis was interested in pregnancy.  Both married (22%) and unmarried women (9%, p=0.06) were interested in pregnancy.  Significantly more women on pregnancy-compatible medications than teratogens were interested in pregnancy (25% vs 8%, p=0.01).

Conclusion: This study demonstrates that systematic, patient-reported measures of pregnancy interest and contraceptive use are effective tools to identify women with unmet reproductive health needs.  There were no demographic or lupus activity characteristics that would have otherwise identified these women for specific attention, highlighting the importance of routine screening to target pre-conception counseling and contraception guidance to the appropriate women at the appropriate time

ACR Meeting Abstracts - https://acrabstracts.org/abstract/use-of-a-patient-reported-survey-to-document-contraceptive-use-and-interest-in-pregnancy-to-identify-patients-with-unmet-pregnancy-prevention-and-planning-needs/