For primary adherence, we found that patients were very likely to fill their new prescriptions for HCQ, often within 30 days of the order. Overall fill rates were 89% in the pre-pregnancy period and 93% during the pregnancy period. Consistent with other studies, we reported that 53–68% of pregnancies in women with lupus during the study period had HCQ available for filling (new orders and refills available), meaning that over 30% of pregnant women with lupus had no order on file to be filled.
Using prescription fill data without accounting for whether patients could fill a prescription in the first place may misrepresent the reason for low rates of HCQ use in pregnant women with lupus. The number of HCQ orders covering the pregnancy period determines the denominator of how many patients could have potentially used the medication.
At the same time, it is difficult to assume what the absence of an order means. Whether a provider did not recommend HCQ or a patient declined it during the visit cannot be inferred through claims or prescription data. Understanding physician adherence to guidelines requires qualitative data on the conversations that took place during these patients’ visits.
Shared Decision Making
To explore reasons for non-use of HCQ by women with lupus during pregnancy, we turned to physicians’ treatment notes. In prior interviews, patients with SLE reported concerns about toxicity and preferences to decrease or stop treatment, while still respecting physician judgment.9 Less is known about how pregnancy affects physician and patient attitudes toward HCQ use.
Qualitative studies of overall medication non-adherence among patients with lupus have suggested that hurried/poor communication with rheumatologists and patient perceptions of minimal benefit from treatment with HCQ may contribute to non-adherence.10-12 One qualitative study from 2018 found that rheumatologists cited patients’ preconceived notions/lack of trust in their recommendations, as well as gaps in other clinicians’ prescribing knowledge, as the primary barrier to medication adherence among women with lupus during pregnancy.13
Using a cohort of deliveries by women with lupus at Stanford Hospital, California, from 2008–16, we identified a case series of 38 pregnant women with lupus not taking HCQ at the first prenatal visit. We included prescription orders and physician notes related to SLE starting one year before the first documented prenatal visit through to the delivery date.
Provider specialty, prior history of lupus medication use, changes to lupus management during pregnancy and reasons for deferring HCQ were abstracted from notes through chart review. Reasons for deferral were separated into explicit and implicit themes, depending on whether physicians’ notes directly addressed HCQ use.
