Systemic lupus erythematosus (SLE, lupus) is an autoimmune disease marked by adaptive immune system activation, formation of autoantibodies, and systemic inflammation affecting organ systems throughout the body. Lupus disproportionately affects women and people of color, who are more likely to have severe disease and experience disparities in care.
To help improve health care quality, safety, and outcomes for all patients with lupus and address long-standing inequities, the ACR partnered with the Centers for Disease Control and Prevention (CDC) to develop five new quality measures for lupus clinical care. The project, called Healthy People with Lupus 2030, was co-chaired by Jinoos Yazdany, M.D., MPH, Chief of Rheumatology at San Francisco General Hospital and Christie Bartels, M.D., MS, Chief of Rheumatology at the University of Wisconsin.
Two interdisciplinary teams worked on the project. One focused on electronic health records (EHR)-based quality measures related to hydroxychloroquine, steroid use, and renal screenings. The other looked at patient-reported outcome measures (PROMs). Both teams used literature reviews, modified Delphi techniques (a communication technique that relies on a panel of experts), and extensive patient input to develop the quality measures.
The clinical measures workgroup extracted quality measures from guidelines, rated them by importance and feasibility, then voted on them in three Delphi sessions based on importance to patients, feasibility of measurement, and public health impact. Measures with consensus on feasibility and importance were ranked to identify the top three.
For PROMs, the experts reviewed quality-of-life domains (depression, pain cognition, etc.) in lupus in tandem with a patient advisory panel composed of people from communities most affected by the disease. Patients helped select the final measures and were, as Yazdany says, “key to the success of the project.”
Ultimately, the teams and their patient partners settled on five key priorities for Healthy People with Lupus 2030:
Increase hydroxychloroquine use Reduce glucocorticoids to no more than 7.5 mg a day for a maximum six months Monitor bi-annually for lupus nephritis Reduce disability among people with lupus Reduce depression and suicide among lupus patients Yazdany notes that the dose and duration of steroids are just below the threshold where the drugs are known to cause “significant harm,” but that most people, even those with lupus nephritis, should be below 7.5 mg by six 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,” she says.
Another problem for lupus patients is the lack of mental health providers, especially in rural areas, who can address depression and suicidal thoughts.
Yazdany says the program is compiling tools and resources to help clinicians refer patients to mental health resources, lupus support groups, and self-management programs. She is optimistic that the quality measures will also aid advocacy efforts to improve mental health services for people with lupus, although they don’t necessarily address common patient roadblocks like cost, transportation, and childcare.
The quality measures don’t include a recommendation for regular eye exams for patients taking hydroxychloroquine, which increases the risk of vision loss, because “ophthalmology visits are not reliably captured in the RISE registry,” Yazdany says.
The ACR’s Rheumatology Infomatics System for Effectiveness (RISE) registry is an EHR-based registry that includes patient data from more than 1,000 community rheumatologists across the country. The data can provide evidence of quality care and help drive quality improvement measures.
Yazdany says RISE has a large role in incorporating the new measures into clinical practice.
“We are in the process of doing detailed measure testing with rheumatology practices that participate in the RISE registry,” she says. “Once data capture and accuracy are verified, the measures will be incorporated into the RISE registry and automatically calculated for people with lupus nationwide. All participating rheumatology practices will be able to view their performance on the RISE registry dashboard.”
Yazdany continues, “It is evident that the commitment of rheumatologists addressing lupus-related health disparities is unwavering. We aimed for simplicity and high impact in these measures, envisioning their uniform implementation across the country. The strength lies in focusing on a few objectives for all to rally behind. Our hope is that implementation of these measures by 2030 will lead to reduced lupus- and steroid-related morbidity, improved functional outcomes, and reduced depression and suicide among people with lupus.”
This work was funded by the CDC through a collaborative agreement with the ACR.
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About ACR Convergence
ACR Convergence, the annual meeting of the American College of Rheumatology, is where rheumatology meets to collaborate, celebrate, congregate, and learn. With more than 240 sessions and thousands of abstracts, it offers a superior combination of basic science, clinical science, business education and interactive discussions to improve patient care. For more information about the meeting, visit https://rheumatology.org/annual-meeting, or join the conversation on Twitter by following the official hashtag (#ACR23).
About the American College of Rheumatology
Founded in 1934, the American College of Rheumatology (ACR) is a not-for-profit, professional association committed to advancing the specialty of rheumatology that serves nearly 8,500 physicians, health professionals, and scientists worldwide. In doing so, the ACR offers education, research, advocacy and practice management support to help its members continue their innovative work and provide quality patient care. Rheumatology professionals are experts in the diagnosis, management and treatment of more than 100 different types of arthritis and rheumatic diseases. For more information, visit www.rheumatology.org.
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