Clinical Report: A Practical Study on a Collaborative Decision-Making Approach

Overview

The HCQ-SAFE investigation developed and tested a shared decision-making tool aimed at improving medication adherence and health outcomes in systemic lupus erythematosus (SLE) patients. The study utilized a collaborative process involving patients and healthcare professionals to address decisional conflicts and enhance adherence to hydroxychloroquine (HCQ).

Background

Hydroxychloroquine is essential for managing systemic lupus erythematosus, yet a significant percentage of patients discontinue its use, leading to adverse health outcomes. Factors contributing to nonadherence include complex treatment decisions and misalignment of treatment goals. Implementing shared decision-making tools may help mitigate these issues.

Data Highlights

No numerical data available in the provided source material.

Key Findings

• 83% of SLE patients discontinue hydroxychloroquine, which is associated with increased hospitalizations and mortality.
• Shared decision-making tools can clarify benefits versus harms and align treatment with patient values.
• The HCQ-SAFE tool was developed through a collaborative process involving patients and healthcare professionals.
• Culturally appropriate e-versions of HCQ-SAFE were created to enhance accessibility for Spanish-speaking patients.
• Decisional conflicts contribute to nonadherence and poor health outcomes in SLE.

Clinical Implications

Utilizing shared decision-making tools like HCQ-SAFE may facilitate communication between patients and clinicians.

Conclusion

The HCQ-SAFE investigation highlights the need for collaborative decision-making in managing systemic lupus erythematosus.

Related Resources & Content

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2. Clinical Rheumatology, 2024 -- Feasibility and Improved Outcomes of Targeting Low Disease Activity State as a Treatment Goal in Routine Management of Childhood-Onset Systemic Lupus Erythematosus
3. Clinical Rheumatology, 2021 -- Evaluating the Role of Antimalarial Medications in Treating Rheumatic and Viral Conditions During the COVID-19 Crisis
4. Arthritis Care & Research -- A Qualitative Analysis of Patient Perspectives and Preferences in Lupus Management to Guide Lupus Guidelines Development
5. 2025 American College of Rheumatology (ACR) Guideline for the Treatment of Systemic Lupus Erythematosus - PubMed
6. EULAR recommendations for the management of systemic lupus erythematosus: 2023 update
7. Arthritis Care & Research
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9. Recommendations on Screening for Chloroquine and Hydroxychloroquine Retinopathy (2016 Revision) - PubMed
10. Special AAO Report: Recommendations on Screening for Hydroxychloroquine Retinopathy (2025 Revision) - Ophthalmology
11. Hydroxychloroquine in patients with systemic lupus erythematosus: how much is enough?
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13. Risk of flare in patients with SLE in remission after hydroxychloroquine or chloroquine withdrawal - ScienceDirect
14. Therapeutic Hydroxychloroquine Blood Levels Are Associated With Fewer Hospitalizations and Possible Reduction of Health Disparities in Lupus - PMC
15. A Pragmatic Trial of a Shared Decision‐Making Intervention to Improve Medication Adherence and Outcomes in Systemic Lupus Erythematosus: The HCQ‐SAFE Study - Packee - Arthritis & Rheumatology - Wiley Online Library
16. Clarifying misbeliefs about hydroxychloroquine (HCQ): developing the HCQ benefits versus harm decision aid (HCQ-SAFE) per low health literacy standards
17. The impact of shared decision-making on quality of life in systemic lupus erythematosus practice: findings from the TRUMP2-SLE prospective cohort study - PubMed
18. Frontiers | The impact of shared decision-making on quality of life in systemic lupus erythematosus practice: findings from the TRUMP2-SLE prospective cohort study