Published guidelines for the treatment of lupus urge patients to carefully plan and prepare for pregnancy and to use contraception even if pregnancy is not intended. But according to a registry study, these recommendations are rarely followed.

According to Megan EB Clowse, MD, MPH, of Duke University School of Medicine in Durham, North Carolina, and colleagues, more than 90% of the more than 20,000 women of reproductive age treated for systemic lupus erythematosus (SLE) between 2019 and 2021 had no documented contraceptive use in their rheumatology clinic records.

Although it is possible that some women used appropriate contraception that does not appear in these records because they did so without consulting their rheumatologist, the findings nevertheless reflect a lack of adherence to guidelines that require rheumatologists to “discuss contraception and pregnancy plans at the initial or early visit and at the initiation of potentially teratogenic medications,” Clowse and colleagues noted in their report in Lupus Science & Medicine.

The results of these conversations should therefore appear in patient records, if only to serve as a measure of the quality of care, the researchers said.

The American College of Rheumatology (ACR) guidelines pay special attention to pregnancy planning because some lupus medications cause birth defects and the risk of other adverse pregnancy outcomes is increased in patients with high disease activity. Patients at risk for thrombosis should especially avoid estrogen-containing contraceptives.

To examine the extent to which these recommendations are being followed, Clowse and colleagues analyzed the records of U.S. clinics participating in the Rheumatology Informatics System for Effectiveness (RISE) registry. This registry includes more than 1,000 rheumatologists (almost a third of all U.S. rheumatologists) and approximately 3.3 million patients with all kinds of rheumatologic diseases. The researchers focused on women aged 18 to 44 with SLE and searched their records for evidence of contraceptive use.

Of the 11,676 patients examined in calendar year 2021, only 8.2% had contraceptive documentation. The rate was about the same, 8.5%, among 9,763 women examined during the COVID-19 pandemic (April 2020-March 2021).

Women aged 18 to 20 were most likely to have used a contraceptive method: 15.3% in 2019 and 19.0% during the pandemic period. In the 36 to 44 age group, the proportion was less than 7% in both periods.

Unfortunately, contraceptive use was documented in only 10.5 percent of patients taking medications for teratogenic lupus—and even of those, less than half (43 percent) used “highly effective contraceptives,” such as long-acting contraceptive implants, intrauterine devices, or surgical sterilization.

There were some bright spots (or at least less dark spots) in the data. Among women at high risk for thrombosis who had documentation, 64% were documented as using highly effective methods. Only 1.5% of those with documentation used estrogen patches, which the ACR guidelines strongly advise against. And estrogen-containing contraceptives were used less frequently among patients with suspected thrombosis risk than among women not at risk (13.6% versus 51.5%).

In addition, patients with a history of lupus nephritis—which the researchers used as a surrogate for high disease activity, which is not otherwise systematically captured in RISE—were more likely to use estrogen-free contraception, although this was by no means always the case.

One finding highlighted by Clowse and colleagues was that documentation rates varied considerably by electronic record system vendor. Approximately 20% of patients treated in practices with Allscripts systems had documentation, while the rate in other practices was only 6%. Additionally, patients in large health systems were more likely to have documentation than those in independent rheumatology groups and solo practices. This suggests, the researchers say, that “ease of documentation is an important determinant of documentation.”

The authors pointed out that the study had several important limitations. As mentioned above, lack of documentation does not always mean that contraception was not used – but at the same time, documentation is no guarantee that patients actually used contraception.

Additionally, documentation was extracted from individual fields of the electronic records; physician notes could not be extracted and therefore were not considered documentation. “Nevertheless,” the researchers wrote, “the rate of contraceptive documentation among women in the RISE registry is very similar to the rate of contraceptive use among women with SLE in the Medicaid population, where data on contraceptive dispensing and adoption are more consistent.”

In the future, the field needs a more systematic approach to identifying and supporting pregnancy intentions in SLE patients, Clowse and colleagues wrote. This could be achieved through changes to electronic record systems and proactive questioning by physicians.

Such approaches, they argued, give women the opportunity to “communicate their interest in becoming pregnant, allowing the physician to effectively counsel the patient on both pregnancy and contraception as needed. Adding such an approach to routine rheumatology care could be an effective strategy to improve the timing and outcome of pregnancy.”