Overall Goals
“It’s been a pleasure to work on this project,” Dr. Jorge says. “As we developed the EHR-based quality measures for lupus care, we have been very intentional at every step of the way about including perspectives from patients with lupus and from rheumatologists who utilize the RISE registry.”
The groups hope to eventually apply the quality and PRO measures to the RISE registry, where they can provide helpful feedback to rheumatologists who care for patients with lupus. “They will be able to see their own reported data, so they can look at the changes, make improvements and, perhaps, reach out to those patients who are struggling, so they can get them back into the office and either try something different or get them a referral. I think there will be some great opportunities there,” Dr. Bartels says. She believes the data will encourage rheumatologists to think creatively “so we can close care gaps and improve outcomes for patients.”
The overall goal for the project is to meet all five measures for all lupus patients by 2030, Dr. Yazdany says. “If people get these things—regular kidney and urine screenings for lupus nephritis; a hydroxychloroquine regimen, which we know is helpful in many ways; limitations on [glucocorticoids], which have numerous side effects; and annual assessments for depression and physical function—it will improve outcomes and hopefully reduce health disparities in this disease.”
The emphasis on lupus will continue beyond the end of the grant in 2025. “This project has helped to identify a pathway forward and has also been instrumental in the ACR obtaining additional funding from the Gordon and Betty Moore Foundation to examine the diagnostic pathway for lupus nephritis,” says Dr. Bartels. “I believe this project work is going to be really important for the future by bringing these measures to practice, and by encouraging discussions about what we can do to support improved care. I’m just excited to see this area move forward to help patients with lupus.”
Leslie Mertz, PhD, is a freelance science journalist based in northern Michigan.
References
- American College of Rheumatology. About the RISE Registry.
- Yazdany J, Jorge A, Barber C., et al. Healthy People with Lupus 2030: goals to improve the quality of care and health of all people with lupus in the United States. ACR Convergence 2023, San Diego, Calif.; abstract 1899.
- Bartels CM, Jorge A, Feldman CH, et al. Development of American College of Rheumatology quality measures for systemic lupus erythematosus: A modified Delphi process with Rheumatology Informatics System for Effectiveness (RISE) registry data review. Arthritis Care Res. 2023 Nov;75(11):2295–2305.
- Katz PP, Barber CEH, Duarte-García A, et al. Development of the American College of Rheumatology’s patient-reported outcome quality measures for systemic lupus erythematosus. Arthritis Care Res. 2024 Epub Jan 15. doi: 10.1002/acr.25301.
- Kroenke K, Spitzer RL, Williams JB. The PHQ-9: validity of a brief depression severity measure. J Gen Intern Med. 2001 Sep;16(9):606–613.
- PROMIS Health Organization. What is PROMIS?
- Agency for Healthcare Research & Quality. Multi-Dimensional Health Assessment Questionnaire (MDHAQ).
