Background/Purpose: Collaborating with the Centers for Disease Control and Prevention (CDC), the ACR has developed new quality measures for lupus clinical care, including clinical and patient-reported outcome measures (PROMs), through a consensus-based process. Here we summarize the development of the 5 measures and introduce corresponding Healthy People with Lupus 2030 goals, which aim to guide the widespread adoption of these measures.

Methods: Two interdisciplinary workgroups, one focused on clinical process-of-care measures and one focused on PROMs, were convened. Both groups used literature reviews, modified Delphi procedures, and extensive patient input to arrive at lupus quality measures. For clinical measures, workgroup members extracted quality constructs from guidelines and rated them by importance and feasibility to generate evidence-based quality measure statements. In 3 Delphi sessions, a multidisciplinary panel voted on the importance to individual patients, feasibility of measurement, and public health impact of each statement. Measures with consensus on feasibility and importance were ranked to identify the top three. For PROMs, experts reviewed literature regarding quality-of-life domains in lupus and conducted focus groups with patients to prioritize domains and measures. A Delphi panel reviewed PROMs corresponding to priority domains for content validity, psychometric quality, feasibility of implementation, and importance for guiding patient-self management. The patient advisory panel reviewed PROMs in parallel and contributed to selecting final measures. Healthy People with Lupus 2030 goals were derived from the final clinical and PRO-based measures.

Results: For clinical process-of-care measures, review of guidelines and distillation of 57 quality constructs resulted in 15 quality measure statements. The 3 most highly ranked quality measures were 1) increasing hydroxychloroquine use, 2) avoiding glucocorticoid use >7.5 mg/day for >6 months, and 3) monitoring of kidney function and urine protein excretion at least every 6 months. For PROMs, literature review identified 12 domains. The workgroup and patient partners ranked depression, physical function, pain, cognition, and fatigue as high-priority domains. Delphi panel members and patient advisors recommended the 2 highest rated domains, physical function and depression, for annual measurement. PROMs recommended for depression were the Patient Health Questionnaire (PHQ) or Patient Reported Outcomes Measurement Information System (PROMIS) depression scales; PROMs recommended for physical function were the PROMIS physical function scales or the Multi-Dimensional Health Assessment Questionnaire (MDHAQ). The Table shows the final measures and corresponding Healthy People with Lupus 2030 goals.

Conclusion: Healthy People with Lupus 2030 provides a vision for improving clinical care for all people with lupus in the United States (Figure). Key priorities are increasing the use of hydroxychloroquine, reducing glucocorticoid exposure, regular monitoring for lupus nephritis (to prevent loss to follow-up and kidney failure), reducing disability, and reducing depression and suicide among people with lupus.

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ACR Meeting Abstracts - 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/