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TOPLINE:

A pictogram-based shared decision-making tool (HCQ-SAFE) improved hydroxychloroquine (HCQ) adherence and reduced decisional conflicts in patients with systemic lupus erythematosus (SLE). The intervention, delivered by physicians, nurses, or pharmacists, required a median of 5 minutes for completion.

METHODOLOGY:

• Researchers conducted a two-phase study in the US, developing interactive, pictogram-based electronic versions of the paper versions of HCQ-SAFE in English and Spanish through iterative review with 30 patient and clinician advisers in phase 1, followed by a prospective pragmatic trial in phase 2 to evaluate its effectiveness.
• A total of 200 adults with SLE (mean age, 44 years; 89.5% female; 51.5% White) on HCQ were recruited across eight rheumatology and lupus clinics in two health systems. Patients had no contraindications to HCQ use and had an HCQ prescription for at least 3 months prior to enrollment.
• Participants completed the 10-item low-literacy decisional conflict scale (DCS) questionnaire before and immediately after the HCQ-SAFE intervention (paper or electronic), which was delivered by physicians (50.0%), pharmacists (28.5%), or nurses (21.5%), discussing tailored benefits and rare harms such as eye toxicity during a clinic visit.
• The primary outcome was a change in HCQ adherence, measured using the proportion of days covered (PDC), at least 3 months pre- vs post-intervention, with adherence defined as PDC ≥ 80%.
• The secondary outcome was a change in DCS scores post-intervention, with residual decisional conflicts defined as DCS scores ≥ 25.

TAKEAWAY:

• Mean HCQ adherence improved from 73% at least 3 months pre-intervention to 91% post-intervention (P < .0001), with the percentage of adherent patients increasing from 62% at baseline to 90% post-intervention (P < .0001).
• Among patients with nonadherence to HCQ at baseline, a 47.4% improvement in HCQ adherence was observed at least 3 months post-intervention, per a multivariate analysis (95% CI, 38.2%-56.5%; P < .0001).
• In 43% of patients with residual or high decisional conflicts (DCS scores ≥ 25) at baseline, DCS scores decreased by 35 points (95% CI, -30.2 to -39.4; P < .0001) post-intervention.
• The median time to complete the intervention was 5 minutes. The clinician and patient likelihood to recommend the intervention, calculated by the Net Promoter Score, was 99.0% and 98.9%, respectively, with more than 95% of clinicians rating it extremely or very feasible (median feasibility score, 8) and 90% of visits using electronic versions.

IN PRACTICE:

“This study expands the scope and utility of HCQ-SAFE by developing the e-version for easier access,” the authors of the study wrote. “[T]hese data will eventually support the use of HCQ-SAFE [shared decision-making] intervention as routine SLE care,” they added.

SOURCE:

The study was led by Caroline Packee, Yale University, New Haven, Connecticut. It was published online on May 18, 2026, in Arthritis & Rheumatology.

LIMITATIONS:

Less than 10% of patients spoke Spanish, requiring further testing in Spanish-speaking groups. High feasibility and likelihood-to-use ratings were noted; therefore, real-world data may be needed to understand uptake beyond research settings.

DISCLOSURES:

The study was supported by a grant from the University of Wisconsin-Madison Institute for Clinical and Translational Research, with additional support from the National Institutes of Health (NIH)-National Center for Advancing Translational Sciences through a Clinical and Translational Science Award. One author disclosed receiving funding through the NIH and Rheumatology Research Foundation Innovation Award. The authors reported having no relevant conflicts of interest.

This article was created using several editorial tools, including AI, as part of the process. Human editors reviewed this content before publication.