Objective:

To develop and test the effectiveness of the HCQ-SAFE shared decision-making tool in improving medication adherence and health outcomes in patients with systemic lupus erythematosus (SLE).

Approach:

• Phase 1: Development of HCQ-SAFE: Developed culturally appropriate, interactive pictogram-based electronic versions of HCQ-SAFE in English and Spanish through a collaborative process involving patients, clinicians, and health literacy experts.
• Phase 2: Clinical Trial: Conducted a prospective pragmatic trial across eight clinics to evaluate the effectiveness of HCQ-SAFE in reducing decisional conflicts and improving adherence among SLE patients.

Key Findings:

• 83% of patients discontinue hydroxychloroquine (HCQ), leading to increased hospitalizations and mortality.
• Shared decision-making (SDM) tools like HCQ-SAFE can help clarify benefits versus harms and align treatment decisions with patient values.
• The final HCQ-SAFE tool received 100% endorsement and satisfaction ratings from a panel of advisers.

Interpretation:

Limitations:

• The clinical impact of the original paper version of HCQ-SAFE was not tested.
• The study focused on specific health systems, which may limit generalizability.

Conclusion:

The HCQ-SAFE tool aims to enhance patient-clinician communication and improve adherence to HCQ in SLE patients.