Jinoos Yazdany, MD

Credit: UCSF Health

A new initiative has been designed to begin implementing new quality measures designed to improve equity for lupus care by 2030, with the work being presented at the American College of Rheumatology’s 2023 Convergence in San Diego, California.¹

The team spearheading the initiative noted that systemic lupus erythematosus—also known as SLE or lupus—is characterized by autoantibody formation, adaptive immune system activation, and systemic inflammation. These impact several different organ systems, and there are known effects on women and individuals of color that have been described as disproportionate.

These disproportionate effects on patients with lupus have resulted in notable disparities in patient care, resulting from increased severity of lupus. As a means to address such issues, the ACR decided to collaborate with the Centers for Disease Control and Prevention (CDC) in the "Healthy People with Lupus 2030" project.

This initiative is co-chaired by Jinoos Yazdany, MD, MPH, known for her work as the chief of rheumatology at San Francisco General Hospital and by Christie Bartels, MD, MS, the chief of rheumatology for University of Wisconsin.

Bartels and Yazdany developed 2 interdisciplinary groups, with the 1 of the groups looking into quality measures based upon electronic health records (EHR) that were related to use of steroids, hydroxychloroquine, and renal screenings. The other group focused on patient-reported outcome measures (PROMs), using reviews of literature, modified Delphi techniques, and many different inputs by patients to develop the new measures.

Specifically, the workgroup members took quality constructs from guidelines and rated their value and their feasibility to design statements that were evidence-based and would result in quality measures. A multidisciplinary panel, with 3 Delphi sessions, took a vote on the value to individual lupus patients, feasibility of measurement, and downstream impacts on public health for each of their statements.¹

For the group dealing with PROMs, the experts involved made a priority of quality-of-life domains in lupus utilizing literature review and patient focus groups. They also used a Delphi panel to assess corresponding PROMs for validity of content, for psychometric quality, for feasibility of their implementation, and patient self-management.

The priorities that then resulted for the Healthy People with Lupus 2030 initiative would include the use of hydroxychloroquine increases, placing limits on glucocorticoids with more than 7.5 mg per day for a maximum of 6 total months.

“We hope that the steroid threshold will be further lowered in future measure revisions as scientific evidence supporting the safe use of lower doses, even for the most severe lupus manifestations, becomes stronger,” Yazdany said in a statement.²

They also decided on bi-annual monitoring for individuals with lupus nephritis, working to drastically lower rates of disability and depression/suicide among those with lupus.

There was an omission of a recommendation for regular eye exams to address the potential danger of vision loss resulting from hydroxychloroquine. This is due to the fact that the ACR's Rheumatology Informatics System for Effectiveness (RISE) registry, based on EHR, does not capture ophthalmology visits.

Nevertheless, the newly developed measures for quality care incorporate RISE heavily in their implementation.

“We are in the process of doing detailed measure testing with rheumatology practices that participate in the RISE registry,” Yazdany noted in the same statement. “Once data capture and accuracy are verified, the measures will be incorporated into the RISE registry and automatically calculated for people with lupus nationwide.”

Yazdany further explained that all rheumatology practices that have opted to participate will have the chance to view their performance through the RISE registry dashboard.

Overall, the new initiative, with CDC funding, is put into effect to improve healthcare quality, safety, and outcomes for all of those with lupus while addressing disparities in care that have been observed for years.

References

1. ^{Yazdany J, Jorge A, Barber C, Barnado A, Bermas B, Duarte-Garcia A, Bennett A, Feldman C, Garg S, Haseley L, Jatwani S, Johansson T, Limanni A, Machua W, Rodgers W, Rovin B, Santiago-Casas Y, Suter L, Zell J, Katz P, Bartels C. Healthy People with Lupus 2030: Goals to Improve the Quality of Care and Health of All People with Lupus in the United States [abstract]. Arthritis Rheumatol. 2023; 75 (suppl 9). https://acrabstracts.org/abstract/healthy-people-with-lupus-2030-goals-to-improve-the-quality-of-care-and-health-of-all-people-with-lupus-in-the-united-states/. Accessed November 12, 2023.}
2. ^{Diverse Task Force Develops New Quality Measures to Improve Lupus Care by 2030. American College of Rheumatology. November 7, 2023. Date accessed: November 12, 2023. https://rheumatology.org/press-releases/diverse-task-force-develops-new-quality-measures-to-improve-lupus-care-by-2030.}