Surprisingly, we found patients and physicians cited a wide range of reasons for deferring use. Over a quarter of patients in our case series had self-discontinued HCQ for pregnancy-related reasons, most frequently citing concerns about ability to conceive on the medication. Several also documented having concerns about maternal or fetal side effects.
On the other hand, physicians frequently reported a patient’s clinical stability while not on HCQ as a reason to defer the medication. When HCQ was not explicitly mentioned in clinical notes, themes included patients being on alternate lupus medications, being off SLE treatment completely and barriers to seeing a rheumatologist.
Given that patients with SLE often see many different specialists, potentially at different institutions, our study was constrained by limited access to external notes and prescription data. It is possible that patients in the case series received HCQ during pregnancy elsewhere and this was not captured in our clinical documentation. Clinical notes are not a substitute for in-depth qualitative interviews specifically designed to elicit patient and physician perspectives on medication use or prescribing practices.
Going Forward
Improving adherence to clinical guidelines requires acknowledging that physicians treat people, not populations, and more personalized, patient-centered interventions may be needed. Patients may express reasonable concerns about medication side effects, may not be aware of risks and benefits of different medications, or may experience barriers to acquiring or taking medication regularly.14 Wherever appropriate, open, informed discussions on preconception counseling or about concerns with patients of childbearing age are important to develop the most appropriate treatment plan.
Our work highlights that how we measure adherence is extremely important to understanding which patients do not receive beneficial medication and why. An upstream issue, such as the absence of a medication order, implies different barriers and solutions than a downstream issue, such as patients not filling or taking a prescription. Qualitative information from such sources as physician notes can provide valuable nuance about physicians’ and patients’ beliefs around using HCQ.
Going forward, results from our research require replication using mixed methods in larger cohorts. We are currently leading a study that will interview patients and physicians to explore more detailed perspectives on their filling and prescribing practices during lupus pregnancy, with a primary focus on HCQ use. What is clear is that if patients are prescribed HCQ, they appear very likely to fill it at least once; our questions lie more in who does not receive or refill that prescription, and why.
