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Published guidelines on lupus management urge that female patients plan and prepare carefully for pregnancy, and use contraceptives when it's not intended -- but these recommendations are only rarely followed, a registry study suggested.

Among more than 20,000 women of childbearing age receiving treatment for systemic lupus erythematosus (SLE) during 2019-2021, more than 90% did not have contraceptive use documented in their rheumatology clinic records, according to Megan E.B. Clowse, MD, MPH, of Duke University School of Medicine in Durham, North Carolina, and colleagues.

While it's possible that some women were using appropriate contraception that didn't appear in these records because they did so without consulting with their rheumatologists, the findings still reflect a lack of adherence to the guidelines, which call for rheumatologists to "[d]iscuss contraception and pregnancy plans at initial or early visit and when initiating potentially teratogenic medications," Clowse and colleagues noted in their report .

Outcomes of those discussions should therefore appear in the records, if for no other reason than to serve as a care quality measure, the researchers indicated.

pay special attention to pregnancy planning because some lupus medications cause birth defects, and risk of other adverse pregnancy outcomes is heightened when patients are experiencing high disease activity. Patients at risk for thrombosis should especially avoid estrogen-containing contraceptives.

To check the degree to which these recommendations are being followed, Clowse and colleagues analyzed records from U.S. clinics participating in the . This registry covers more than 1,000 rheumatologists (nearly one-third of the U.S. total) and some 3.3 million patients with all manner of rheumatologic conditions. The researchers focused on women ages 18-44 with SLE, and looked for documentation of contraception in their records.

Among 11,676 such patients seen during calendar 2021, just 8.2% had any contraception documentation. The rate was about the same, 8.5%, for 9,763 women seen during the COVID-19 pandemic (April 2020-March 2021).

Women ages 18-20 were most likely to have documented contraception, at 15.3% in 2019 and 19.0% during the pandemic period, versus less than 7% for those ages 36-44 across both intervals.

Unfortunately, contraceptive use was recorded for only 10.5% of patients using teratogenic lupus drugs -- and even for those, fewer than half (43%) were using "highly effective contraception," such as long-acting contraceptive implants, intrauterine devices, or surgical sterilization.

Some bright spots (or less dark, anyway) could be seen in the data. Among women at high risk of thrombosis who did have documentation, 64% were recorded as using highly effective methods. Only 1.5% of patients with documentation were using estrogen patches, which the ACR guidelines recommend firmly against. And estrogen-containing contraceptives were used less frequently in patients believed to be at risk for thrombosis compared with women not at risk (13.6% vs 51.5%).

As well, patients with a history of lupus nephritis -- which the researchers used as a surrogate for high disease activity, which otherwise isn't recorded systematically in RISE -- were also more likely to use estrogen-free contraceptives, although this was far from universal.

One finding highlighted by Clowse and colleagues was that documentation rates varied considerably by electronic record system vendor. Approximately 20% of patients seen at practices using Allscripts systems had documentation, whereas rates were as low as 6% at others. Also, patients seen in big health systems were more likely to have documentation than those in independent rheumatology groups and single-doctor practices. This suggests, the researchers said, that "ease of documentation is a key driver of documentation."

The authors cautioned that the study came with several important limitations. As noted earlier, lack of documentation doesn't always equate to lack of contraception -- but at the same time, documentation is no guarantee that patients were actually using birth control.

Also, documentation was extracted from discrete fields in the electronic records; physicians' notes could not be extracted and hence weren't considered documentation. "Despite this," the researchers wrote, "the rate of contraception documentation is very similar for women in the RISE registry to the rate of contraception use for women with SLE in the Medicaid population, where data about contraception dispensing and insertion are more consistent."

Going forward, the field needs a more systematic approach to eliciting and supporting pregnancy intentions from SLE patients, Clowse and colleagues wrote. This could be accomplished through modifications to electronic record systems and proactive questioning by clinicians.

Such approaches, they argued, give women the opportunity "to share their interest in pregnancy, allowing the provider to effectively counsel about both pregnancy and contraception, as appropriate to the patient. Adding such an approach to routine rheumatology care could be an effective strategy to improve pregnancy timing and outcomes."

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