Background/Purpose: Although previous SLE treatment guidelines recommended judicious use of antimalarials, there is a growing body of evidence demonstrating that HCQ prevents flares, protects against irreversible organ damage, and increases long-term survival in SLE patients. As a result, there has been a paradigm shift: current guidelines recommend treatment with HCQ for all patients with SLE unless there are specific contraindications. Nonetheless, the rates of HCQ use in many SLE cohorts remain at 65% or less. We reviewed a large, diverse cohort of SLE patients at an academic center in order to identify reasons why many SLE patients are not on HCQ.

Methods: A retrospective chart review was conducted of patients in our longitudinal SLE cohort. There were 287 SLE patients reviewed at baseline (2004-2006), 229 at first follow-up (2008-2010), and 102 at second follow-up (2015-present). Active medications were recorded at each time point as well as the primary reason for HCQ non-use when applicable. SLICC Damage Index (SDI) was measured at baseline.

Results: 67% of patients in our cohort were taking HCQ at baseline, 66.8% at first follow-up, and 73.5% at second follow-up (p=NS). Overall, patient preference (43%) was the most common reason for HCQ non-use, followed by physician preference (21%) and allergy/side effects (11%). Although less than 2% of patients had documented eye toxicity as a reason for HCQ discontinuation at baseline and first follow-up, this increased to 9.8% at second follow-up (p=0.001).

We compared SDI at baseline among patients who were actively taking HCQ (n=194), those who had never taken HCQ (n=52), and those who discontinued HCQ for any reason (n=41). We found evidence of SLE-related damage (SDI ≥ 1) in 54.6% of patients on HCQ, 75.6% of HCQ never users and 78.8% of former users (p=0.001 by Chi-squared analysis).

Conclusion: Although the rate of HCQ use in our longitudinal SLE cohort has remained stable, the percentage of patients who discontinued HCQ due to eye-related toxicity has increased. Further studies are required to determine whether this increase in eye-related toxicity can be attributed solely to cumulative HCQ dose, or whether adherence to ophthalmology guidelines and availability of more sensitive testing modalities has led to earlier and more frequent detection. Our data also demonstrate that rates of damage accumulation are comparable between HCQ never and former users and lowest in patients taking HCQ, which reinforces the importance of consistent HCQ use in SLE. This study elucidates an important disconnect between current evidence and clinical practice. Quality improvement initiatives are needed to address this discrepancy in an effort to improve patient outcomes.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/why-arent-all-patients-with-sle-taking-hydroxychloroquine-a-retrospective-chart-review/