PATIENT PREFERENCES FOR TREATMENT OF SYSTEMIC LUPUS ERYTHEMATOSUS—A QUALITATIVE STUDY

PV263 / #331 Poster Topic: AS24 - SLE-Treatment Background/Purpose Systemic lupus erythematosus (SLE) requires long-term treatment with medications that carry risks of side effects and toxicities, including the risks of ocular toxicity from hydroxychloroquine, infection from oral and biologic immunosuppressants, and glucocorticoid toxicity from prednisone use. The objective of this study was to evaluate how patients approach lupus treatment decisions, including harms/benefits trade-offs with ongoing use of hydroxychloroquine and other medications for SLE. Methods We conducted a qualitative study of patients with SLE using focus groups. We identified potential study participants with a diagnosis of SLE at Massachusetts General Hospital and affiliate hospitals. We randomly selected patients for invitation to participate in virtual focus groups, with intentional oversampling of racial minority groups, males, and patients with lupus nephritis. Virtual focus groups were conducted by a physician moderator using a standardized focus group guide. Topics included key factors in patients’ decision-making process for lupus treatment decisions in general, specific factors involved in the use of hydroxychloroquine, involvement in treatment decisions, and sources of information used to make treatment decisions. Focus groups were audio recorded and transcribed. Two researchers conducted an inductive thematic analysis of the focus group transcripts through an iterative process using Dedoose. Selected themes and subthemes were independently verified by a third assessor. Results Twenty-eight individuals with SLE participated in 1 of 4 focus groups. The mean age was 47 years, and they were 89% female, 14% Black or African American, 11% Hispanic, and 21% Asian (Table 1). These participants had a range of lupus manifestations, including 39% with lupus nephritis and 32% with neurologic lupus, and the median disease duration was 9 years (IQR 6-16 years). All study participants were prior or current users of hydroxychloroquine, and the majority had used oral glucocorticoids and 1 or more oral immunosuppressants. There were 9 major themes and 18 subthemes identified along with illustrative quotes (Table 2). Patients with lupus emphasized both short-term and long-term considerations, including the priorities of avoiding short-term side effects of medications, controlling lupus disease activity, and also avoiding long-term damage from both medication toxicity and lupus itself. Preferences to avoid glucocorticoid toxicity and to maintain quality of life and physical function were also common drivers of lupus treatment decisions. The concern for future organ damage was a key factor for the decision to continue long-term hydroxychloroquine use, illustrated by a participant’s quote, “The hydroxychloroquine is like an insurance so you don’t get more damage to something else, sometimes out of a flare.” The risk of hydroxychloroquine retinopathy was the primary shared concern related to hydroxychloroquine use, but patients consistently reported that routine screening for hydroxychloroquine retinopathy provided reassurance about the safety of continuing the medication. Trust in their medical team was a key factor that supported confidence in treatment decisions. Table 1. Characteristics of Study Participants Table 2. Themes Highlighting Important Factors for Patients in Making Lupus Treatment Decisions Conclusions Patients with SLE face ongoing treatment decisions for this chronic condition, and they incorporate multiple factors to balance both the short- and long-term harms and benefits of medications.

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