by The American College of Rheumatology (ACR) is leading an initiative to develop and implement equitable quality measures for lupus care by the end of the decade. The project, called Healthy People with Lupus 2030, aims to improve health care quality, safety, and outcomes for all patients with lupus and address disparities in care.
Lupus, or systemic lupus erythematosus (SLE), is an autoimmune disease that affects organ systems throughout the body. It disproportionately affects women and people of color, who often experience more severe disease and disparities in care.
The ACR partnered with the Centers for Disease Control and Prevention (CDC) to develop five new quality measures for lupus clinical care. The project was co-chaired by Dr. Jinoos Yazdany, Chief of Rheumatology at San Francisco General Hospital, and Dr. Christie Bartels, 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 team focused on patient-reported outcome measures (PROMs). Both teams used literature reviews, expert input, and patient feedback to develop the measures.
The clinical measures team extracted quality measures from guidelines and rated them based on importance and feasibility. They then used modified Delphi techniques (a communication technique that relies on a panel of experts) and patient input to rank the measures and identify the top three priorities. These include increasing hydroxychloroquine use, reducing glucocorticoid use, and monitoring for lupus nephritis bi-annually.
The PROMs team reviewed quality-of-life domains in lupus and collaborated with a patient advisory panel to select the final measures. The team focused on reducing disability, depression, and suicide among lupus patients.
Dr. Yazdany emphasizes that the project aims to address the dosage and duration of steroid use, ensuring that most people with lupus are below 7.5 mg within six months. The project also aims to improve mental health services for lupus patients, who often face a lack of mental health providers, especially in rural areas.
The quality measures developed through the project will be incorporated into the ACR’s Rheumatology Informatics System for Effectiveness (RISE) registry, an electronic health record-based registry that includes data from over 1,000 community rheumatologists across the country. The measures will help drive quality improvement in lupus care and allow participating rheumatology practices to view their performance on the RISE registry dashboard.
Dr. Yazdany believes that implementing these quality measures by 2030 will lead to reduced morbidity, improved functional outcomes, and reduced depression and suicide among people with lupus. The project was funded by the CDC through a collaborative agreement with the ACR.
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