Integrating Patient-Reported Quality Measures in Systemic Lupus Erythematosus: Development of the American College of Rheumatology Implementation Guide - Report - MDSpire
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Incorporating Patient-Reported Quality Metrics in Systemic Lupus Erythematosus: Creation of the Implementation Guide by the American College of Rheumatology

  • By

  • Catherine Nasrallah

  • Cherish Wilson

  • Christine Hariz

  • Christie M. Bartels

  • Shanthini Kasturi

  • Wambui Machua

  • Amy Bennett

  • Kate Chiseri

  • Allison Plitman

  • Starla Hairston Blanks

  • April Jorge

  • Patti Katz

  • Jinoos Yazdany

  • Shivani Garg

  • April 29, 2026

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Clinical Report: Incorporating Patient-Reported Quality Metrics in SLE

Background

Systemic lupus erythematosus (SLE) is a complex autoimmune disease that presents significant challenges in management due to its multisystem involvement and variability in clinical presentation. The incorporation of patient-reported outcome measures (PROMs) is increasingly recognized as essential for improving disease management and aligning care with patient priorities. The ACR has developed evidence-based measures to support the integration of PROMs into clinical practice.

Data Highlights

No numerical data or trial data provided in the source material.

Key Findings

  • This study is the first to examine the implementation of ACR-recommended PROMs in SLE clinical care.
  • Barriers and facilitators to collecting PROMs in routine practice were identified through qualitative interviews.
  • The SLE Quality Measures Implementation Guide is an open-source resource for integrating PROMs into clinical workflows.
  • Standardized assessments of symptoms such as fatigue, pain, and emotional well-being are critical for patient-centered care in SLE.
  • Patients with SLE often report poorer health-related quality of life compared to those with other chronic conditions.

Clinical Implications

The implementation of PROMs in SLE care can enhance the understanding of patient experiences and improve shared decision-making. Clinicians are encouraged to utilize the SLE Quality Measures Implementation Guide to facilitate the integration of these measures into their practice.

Conclusion

The development of the SLE Quality Measures Implementation Guide represents a significant advancement in the integration of patient-reported outcomes into SLE clinical care, aiming to improve patient-centered approaches.

Related Resources & Content

  1. American College of Rheumatology, Quality Measurement, 2023 -- Incorporating Patient-Reported Quality Metrics in Systemic Lupus Erythematosus
  2. Arthritis Care & Research — A Qualitative Analysis of Patient Perspectives and Preferences in Lupus Management to Guide Lupus Guidelines Development
  3. Clinical Rheumatology — Creation of an Innovative Clinimetric Instrument: Patient-Reported Disease Activity Index for Rheumatoid Arthritis (PARDAI-RA) by PANLAR to Evaluate Individuals with Rheumatoid Arthritis
  4. Clinical Rheumatology — Guidelines from the International League of Associations for Rheumatology on Managing Psoriatic Arthritis in Low-Resource Environments
  5. Clinical Rheumatology — Assessment and Application of a Patient-Reported Experience Measure for Individuals with Rheumatoid Arthritis and Spondyloarthritis in the Netherlands
  6. Quality Measurement | American College of Rheumatology
  7. 2025 American College of Rheumatology (ACR) Guideline for the Treatment of Systemic Lupus Erythematosus
  8. RISE Exclusive: Q2 Issue – July 1, 2026 | American College of Rheumatology
  9. EULAR recommendations for a core dataset to support clinical care and translational and observational research in systemic lupus erythematosus - ScienceDirect
  10. EULAR recommendations for the management of systemic lupus erythematosus with kidney involvement: 2025 update - ScienceDirect
  11. Long-term effect of anifrolumab on patient-reported outcomes in systemic lupus erythematosus (TULIP-LTE): a randomised, placebo-controlled, phase 3 long-term extension trial - ScienceDirect
  12. LLDAS and remission attainment with anifrolumab treatment in patients with systemic lupus erythematosus: results from the TULIP and long-term extension randomised controlled trials - ScienceDirect
  13. Poor health-related quality of life despite Lupus Low Disease Activity State or Definitions of Remission in systemic lupus erythematosus (SLE) remission in patients with SLE: results from a clinical trial setting
  14. Real-world longitudinal assessment of anifrolumab in patients with systemic lupus erythematosus: clinical outcomes, safety and modulation of cytokines and neutrophil activity - PMC
  15. Development of the American College of Rheumatology’s Patient-reported Outcome Quality Measures for Systemic Lupus Erythematosus - PMC
  16. New efforts to incorporate patient-reported outcomes into lupus clinical trials: report of the community meeting convened by the Lupus Accelerating Breakthroughs Consortium (Lupus ABC), 16–17 October 2024 | Lupus Science & Medicine

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