Hydroxychloroquine Dosage Preferences in Patients with Systemic Lupus

In a survey of individuals with systemic lupus (SLE) receiving treatment with hydroxychloroquine (HCQ), more than one third of patients reported wanting to change their dose, and nearly one-quarter altered their dose without physician consultation. This study was presented at the American College of Rheumatology (ACR) Convergence 2021.

“Although HCQ has been shown to reduce SLE flares, concerns exist regarding side effects from long-term use. Very little information is available on patient preferences regarding decisions to continue, lower, or stop the drug,” explained the study authors.

The researchers conducted telephone interviews with patients previously enrolled into two Canadian SLE clinical trial studies. In total, 42 interviewees were included. Two reviewers conducted a thematic analysis of the transcribed interviews.

Thirty-eight of 42 patients (90%) were female, and 32 patients (76%) were Caucasian, four were Black (10%), four were Asian (10%), and two participants identified as other races/ethnicities (5%). Patients were approximately 56 years old, on average. The interviews centered around past experiences with HCQ dose changes, whom (patient or physician) makes those decisions, and patients’ current HCQ preference.

Over the course of their disease progression, roughly half of patients (52.4%) had lowered their dose and 35.7% stopped treatment. Decisions were most often made by physicians. However, almost one-quarter of patients decided to lower or stop HCQ without consulting with their doctor. Most patients reported that they would prefer to remain at their current dose to avoid flares. Over one-third of patients expressed interest in lower, stopping, or increasing their dose.

Themes regarding preferences that emerged from the interviews included SLE control, patients’ trust in the provider’s decisions, management of other medications, HCQ safety, and effectiveness of treatment. Participants also reported concerns about toxicities. The researchers noted that a higher proportion of patients who were not Caucasian preferred maintaining their current dose (80% vs. 50% of Caucasians.) Additionally, the 10 youngest patients were more likely to prefer their current dose compared with the 10 oldest patients (60% vs. 30%).

According to the authors, a limitation of this study is that it primarily included participants with long-established disease. Only around 10% of interviewees had more recent-onset SLE.