Skip to Main Content
Yale School of Medicine
YSM Home

INFORMATION FOR

Improving Lupus Care with Patient-Reported Outcome Measures

Publication Title: Integrating Patient‐Reported Quality Measures in Systemic Lupus Erythematosus: Development of the American College of Rheumatology Implementation Guide

Summary

Question
This study examined the implementation of patient-reported outcome measures (PROMs) in routine care for systemic lupus erythematosus (SLE). The authors aimed to identify barriers and facilitators to PROM integration and develop the American College of Rheumatology (ACR) SLE Quality Measures Implementation Guide to support national adoption.
Why it Matters
Systemic lupus erythematosus (SLE) is a complex autoimmune disease affecting multiple organ systems and significantly impacting physical and mental health. PROMs, which capture patients’ perspectives on their health, can provide valuable insights into symptoms such as depression, fatigue, and physical function that are often overlooked in clinical assessments. This study is important because it highlights how integrating PROMs into routine care can enhance patient-centered management of SLE, improve health outcomes, and address mental health concerns, which are prevalent in SLE patients. The findings have the potential to guide rheumatologists in improving care delivery standards.
Methods
Five rheumatology practices across the United States participated in a pilot study to implement ACR-recommended PROMs for at least 50 consecutive SLE patients. PROMs included tools assessing physical function (such as RAPID-3 and MDHAQ) and depression (such as PHQ-8). Practices integrated these measures into electronic health records (EHRs) and standardized workflows. Semi-structured interviews with clinicians and staff were conducted to identify challenges and best practices, guided by the Consolidated Framework for Implementation Research (CFIR).
Key Findings
The researchers found that PROMs were well-accepted and improved clinical decision-making by uncovering mental health concerns, facilitating timely interventions such as counseling or antidepressants. Practices reported that PROMs enhanced communication between patients and providers, improved patient satisfaction, and promoted a more holistic approach to care. However, challenges included survey fatigue, emotional sensitivity of mental health questions, inconsistent PROM administration, and difficulties with EHR integration. Practices that standardized workflows and provided staff training reported smoother implementation.
Implications
This study underscores the importance of using PROMs to address both physical and mental health in SLE care. The findings highlight the potential for PROMs to enhance patient-centered care by aligning treatment plans with patient priorities. The SLE Quality Measures Implementation Guide offers practical tools, such as workflow templates and training resources, to support broader adoption of PROMs and improve care quality across diverse settings.
Next Steps
The authors recommend expanding the use of the SLE Quality Measures Implementation Guide to more practices and evaluating its impact on clinical outcomes. Further research is needed to address challenges such as EHR integration, patient engagement, and interpreting PROM data in patients with comorbid conditions. Additionally, efforts should focus on increasing access to mental health services for SLE patients.
Funding Information
This research was supported by the Centers for Disease Control and Prevention (CDC). The content is solely the responsibility of the authors and does not necessarily represent the official views of the CDC or the American College of Rheumatology. Yale University also provided funding and support for this research.

Full Citation

Nasrallah C, Wilson C, Hariz C, Bartels C, Kasturi S, Machua W, Bennett A, Chiseri K, Plitman A, Blanks S, Jorge A, Katz P, Yazdany J, Garg S. Integrating Patient‐Reported Quality Measures in Systemic Lupus Erythematosus: Development of the American College of Rheumatology Implementation Guide. Arthritis Care & Research 2026 PMID: 41801066, DOI: 10.1002/acr.80038.
This AI-assisted summary has been reviewed and approved by at least one of the study's authors to ensure it accurately reflects the research.

Authors

  • Catherine Nasrallah

    First Author
    Other Institution

Other Authors

  • 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

Research Themes

Concepts

Get Involved With This Research

Media Contact

For media inquiries, please contact us.
ysmmedia@yale.edu
Support