Exploring Patient Insights and Preferences in Lupus Care to Inform the Development of Treatment Guidelines

By
Shivani Garg
Izzy Hartel
Lisa R. Sammaritano
Anca Askanase
Bonnie L. Bermas
Maria Dall'Era
Alí Duarte-García
Victoria P. Werth
Brad Rovin
Reem A. Mustafa
Amy S. Turner
Bené Williams
Brian L. Ung
Hiya Bhavsar
Monique C. Gore-Massy
Nahirannette Pulido
Natacha Guerrero
Natalie M. Smith
Wambui Machua
Linda T. Hiraki
Mary Beth Son
July 1, 2026

Arthritis Care & Research

Background

Lupus nephritis and systemic lupus erythematosus are chronic autoimmune diseases that significantly impact patient quality of life. The American College of Rheumatology has recognized the need for patient insights in guideline development.

Data Highlights

No numerical data or trial data is presented in the source material.

Key Findings

Three thematic domains emerged from patient discussions: treatment and monitoring, clinical communication, and improving transparency.
Patient engagement is essential for identifying values and priorities that inform clinical practice recommendations.
The study involved 28 patients, with 19 unique individuals participating in the Patient Panels.
Participants were purposefully recruited to represent diverse cultural, social, and ethnic backgrounds.
Facilitated discussions aimed to capture patient experiences and preferences regarding lupus management.

Clinical Implications

Incorporating patient perspectives into guideline development can enhance adherence to treatment and improve patient outcomes. Clinicians should consider these insights when making treatment decisions to ensure a patient-centered approach.

Conclusion

The integration of patient insights into lupus care guidelines is vital for aligning treatment recommendations with patient values and enhancing shared decision-making.