‘Now is the time for action’: ACR program seeks to overcome disparities in lupus care
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SAN DIEGO — Improving hydroxychloroquine use and reducing glucocorticoid exposure are among the top priorities of the Healthy People with Lupus 2030 initiative, which aims to address care disparities, said a speaker at ACR Convergence 2023.
Other priorities for the program — the product of a collaboration between the CDC and the American College of Rheumatology — include regular monitoring for lupus nephritis and reducing disability, depression and suicide among patients with lupus.
“Lupus remains a critical health issue, particularly affecting young Black, Hispanic and Asian women,” Jinoos Yazdany, MD, chief of the division of rheumatology at Zuckerberg San Francisco General Hospital, and the Alice Betts Endowed Professor of Medicine at the University of California, San Francisco, told attendees. “It remains among the top causes of death among women. The disparities in health outcomes for lupus patients are not just alarming but demand immediate action.”
To develop targets for improving lupus care, particularly among the most impacted populations, Yazdany and colleagues convened two interdisciplinary workgroups. One focused on the processes of lupus clinical care, while the other focused on patient-reported outcome measures. The results of these investigations would inform the corresponding ACR initiative of the Healthy People with Lupus 2030.
“The Healthy People with Lupus initiative will tackle the disease from multiple angles,” Yazdany said. The aim is to develop a national set of quality measures to improve clinical care and outcomes for patients, she added.
Regarding the clinical process-of-care measures, the group created 15 quality measure statements from an initial set of 57 quality constructs. Of those 15 measures, three that were deemed most important were increasing hydroxychloroquine use, avoiding glucocorticoid use above 7.5 mg per day for more than 6 months, and the monitoring of kidney function and urine protein excretion at least every 6 months.
Regarding the patient-reported outcome measures, the group initially identified 12 domains. After close work with patient representatives, depression, physical function, pain, cognition and fatigue were ranked as the highest priority areas of intervention.
“We had extensive involvement of a patient advisory board composed of Black, Hispanic and Asian patients,” Yazdany said. “They were with us every step of the way.”
Of the 12 patient-reported outcome domains, physical function and depression were recommended for annual assessment.
“Depression and suicide are huge problems [among lupus patients],” Yazdany said.
The five measures are currently undergoing “rigorous testing” and will ultimately be integrated into the campaign, according to Yazdany.
“In discussion with rheumatologists across the country, people really do have a shared commitment to overcoming these health-related disparities,” she said. “The Healthy People with Lupus campaign will use these five measures to set broad public health goals for the clinical care of lupus.”
Yazdany said she sees the campaign as “setting goalposts” for what can be achieved in caring for this underserved patient population.
“We have known about disparities in this disease for decades — now is the time for action,” she said.
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Yazdany J. Abstract 1899. Presented at: ACR Convergence 2023; Nov. 10-15, 2023; San Diego.
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