A Pragmatic Trial of a Shared Decision-Making Intervention to Improve Medication Adherence and Outcomes in Systemic Lupus Erythematosus: The HCQ-SAFE Study - Scorecard - MDSpire

A Practical Study on a Collaborative Decision-Making Approach to Enhance Medication Compliance and Health Outcomes in Systemic Lupus Erythematosus: The HCQ-SAFE Investigation

  • By

  • Caroline Packee

  • Jay J. Patel

  • Jessica Kent

  • Betty Chewning

  • Sancia Ferguson

  • Patricia Tellez-Giron

  • David Gazeley

  • Christie M. Bartels

  • Shivani Garg

  • June 4, 2026

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Clinical Scorecard: A Practical Study on a Collaborative Decision-Making Approach to Enhance Medication Compliance and Health Outcomes in Systemic Lupus Erythematosus: The HCQ-SAFE Investigation

At a Glance

CategoryDetail
ConditionSystemic Lupus Erythematosus (SLE)
Key MechanismsHydroxychloroquine (HCQ) prolongs disease-free and damage-free survival.
Target PopulationPatients aged 18 years or older with a validated SLE diagnosis.
Care SettingRheumatology and lupus clinics

Key Highlights

  • 83% of patients discontinue HCQ, leading to higher hospitalizations and mortality.
  • Shared decision-making (SDM) tools can reduce decisional conflicts and improve adherence.
  • Culturally appropriate e-versions of HCQ-SAFE were developed for English and Spanish speakers.
  • The study included patients with varying durations of HCQ use and aimed for diverse representation.

Guideline-Based Recommendations

Diagnosis

  • Validated SLE diagnosis according to the 2019 EULAR/American College of Rheumatology classification criteria.

Management

  • Use of HCQ as the cornerstone therapy for SLE.

Monitoring & Follow-up

  • Evaluate adherence and decisional conflicts using HCQ-SAFE tool.

Risks

  • Potential for macular toxicity associated with HCQ use.

Patient & Prescribing Data

Patients with SLE, including those reporting Spanish as their primary language.

Patients often face challenges in weighing benefits and harms of HCQ.

Clinical Best Practices

  • Implement shared decision-making tools in clinical practice.
  • Ensure culturally appropriate communication and materials for diverse patient populations.

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