Background/Purpose: Hydroxychloroquine (HCQ) is recommended in all patients with systemic lupus erythematosus (SLE).  Studies suggest that a significant proportion of subjects are non-adherent to daily HCQ, leading to poor disease control, increasing morbidity and mortality. One of the main barriers to adherence is reported to be patients’ fear of side effects most notably retinopathy.  The objectives of this study were to assess SLE patients’ (1) perception of the risk vs. benefit associated with the use of HCQ, (2) awareness of the risk factors of HCQ-induced retinopathy.

Methods: We administered an internet-based survey to SLE patients registered in the Lupus Alliance of Upstate New York (LAUNY) email listserv over 3 months.  The survey included demographic information, such as age, gender, ethnicity, and education level, and their perception of the risks and benefits of HCQ therapy.  Participation was voluntary, anonymous, and restricted to adults 18 years or older.   

Results: A total of 94 subjects completed the survey.  The mean age of responders was 48.4 ± 13.1 years; 98% (N=92) were women, 80% (N=75) Caucasian and 10% (N=9) African American. Fifty percent (N=47) had a bachelor’s degree or higher education. The mean duration of SLE was 14 years with upper and lower quartiles of 21 and 5 years.  Ninety five percent of patients (N=89) were either current or past users of HCQ (66 current use, 23 past use).  Among them, 97% (N=86) of patients reported regular visits to eye doctors and 82% (N=73) had a baseline eye exam with HCQ initiation.  The mean duration of HCQ use was 10 years with 15 years and 3 years of upper and lower quartiles.   Twenty three percent of patients (N=22) with HCQ exposure were unaware of the potential ocular toxicity associated with HCQ use.  More than 60% (N=57) reported that they will continue HCQ in view of its beneficial effects, despite potential risk of eye related-side effects. A significant proportion (37%, N=34) of patients were concerned about ocular toxicity associated with HCQ and expressed their desire to stop or discuss discontinuation of HCQ with their physician.  Up to 60% of patients were not aware of predictors of retinal toxicity associated with HCQ.  

Conclusion: Almost all of our patients on HCQ reported having regular eye check-ups for retinal toxicity.  Many patients were concerned about potential retinal toxicity with HCQ use and were considering stopping the medication. In addition, a substantial number of patients were not aware of HCQ associated retinopathy. Our study identified a need for patient education regarding risks, benefits of HCQ therapy and awareness about potential predictors of HCQ retinal toxicity.  Furthermore, educating healthcare providers to address HCQ toxicity on an ongoing basis will lead to better medication compliance and disease outcomes.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/patient-perception-of-benefit-and-risks-associated-with-hydroxychloroquine-use-in-systemic-lupus-erythematosus-sle/