Hydroxychloroquine Decision Aid Helps Clarify Lupus Patient Misbeliefs

Hydroxychloroquine (HCQ) is a cornerstone of lupus treatment and recommended for all patients with systemic lupus erythematosus (SLE) if there are no contraindications. Rheumatologists are well-versed in the benefits of HCQ, including reduced lupus flares, less organ damage, lower rates of thrombotic events and cardiovascular disease, and prolonged survival. Interestingly, over 50% of patients self-discontinue hydroxychloroquine within the first year of therapy. This trend is problematic given that nonadherence to HCQ is associated with higher hospitalization rates and higher risk of renal failure.

Garg et al, of the University of Wisconsin, aimed to create a benefit-versus-harm shared decision-making tool for hydroxychloroquine for patients with SLE.¹ The authors noted that prior qualitative studies demonstrated that patients’ lack of understanding regarding the role of HCQ in SLE and inflated fears of rare eye toxicity were the 2 main reasons for HCQ self-discontinuation. Patients noted they did not know HCQ could improve survival and protect internal organs in SLE and stated they may have continued the medication if they were told about these benefits. Thus, Garg et al concluded a benefit-versus-harm shared decision-making tool for HCQ would be beneficial, particularly since decision aids designed with low health literacy guidelines can increase patient participation in decision-making and improve adherence and outcomes.

Researchers designed the decision tool, HCQ-SAFE, using the Agency for Healthcare Research and Quality (AHRQ) low health literacy guidelines and prior decision aid tools as a guide. HCQ-SAFE was developed using an iterative editing process, including the involvement of lupus experts and patient advocates. The tool was pilot tested and implemented in 40 visits across 4 clinics to examine feasibility and usability. The patients included in the pilot also completed a 3-item self-knowledge test to gauge their basic understanding of the benefits versus low risks of HCQ in lupus, as well as a decisional conflict scale.

Data regarding feasibility and usability were obtained from the final version of HCQ-SAFE. Usability and impact were measured by calculating patient understanding and knowledge of the benefits versus the harm of HCQ in SLE. Feasibility was determined by measuring the percentage of eligible visits using HCQ-SAFE.

In this cohort, 78% were women, 55% were of Black race, and 27% had low health literacy. Four key domains were identified for the decision aid: organ damage, death, blood clots, and eye toxicity and other side effects/concerns. Using published data and event rates, the team developed parallel pictograms to highlight risk of organ damage with or without HCQ use over time. The risk of eye toxicity was included so patients could understand the significant benefits of HCQ use versus rare retinal toxicity. The team also created pictograms to show the decrease in early deaths and blood clots over time with HCQ use.

Health care advisors and patients reported a high likelihood to use the decision aid during clinic visits and recommend the tool to peers, respectively. Researchers found that after reviewing HCQ-SAFE, all patients scored 100% on the self-knowledge test about the benefits versus harms of HCQ. No residual decisional conflict was reported. The intervention was completed in all 40 visits (100% completion rate) and took an average of 7.6 minutes to complete.

This study demonstrates that a novel shared decision-making tool to help inform patients of the benefits of hydroxychloroquine and its rare, limited risks resulted in high satisfaction scores for both patients and clinicians. The study had some limitations, notably that the tool is available in an English-only, paper-only format and testing occurred across 4 clinics in a single health facility. The authors also acknowledged that the role of HCQ in reducing flares is important to include in future versions of the decision aid. However, HCQ-SAFE and similar tools are powerful ways to potentially improve patient understanding of the role of HCQ in SLE. Such tools may improve adherence to HCQ by increasing knowledge, clarifying misbeliefs, and resolving decision conflicts about medication use.

Reference

[1] Garg S, Ferguson S, Chewning B, Gomez S, Keevil J, Bartels C. Clarifying misbeliefs about hydroxychloroquine (HCQ): developing the HCQ benefits versus harm decision aid (HCQ-SAFE) per low health literacy standards. Lupus Sci Med. 2023. doi:10.1136/lupus-2023-000935