The third measure—regular kidney and urine screenings—is intended to detect SLE-caused lupus nephritis, which if left untreated can result in kidney failure. “Up to 50% of people with SLE can develop lupus nephritis, which may not have clear symptoms and could be missed unless specific screening laboratory tests are done,” Dr. Jorge says. “I hope this quality measure will help identify people with lupus nephritis early in the disease course, so they can be treated effectively.”
The work group is now planning discussions with the Centers for Medicare & Medicaid Services (CMS) to determine which measures to advance to payment programs. In addition, several RISE-enrolled rheumatology practices are collecting pilot data that the work group can compare with related EHR data from the RISE registry to make sure they match well. “If so, this will tell us that we can use EHR data from the RISE registry to accurately assess those quality measures,” Dr. Jorge says. “Our hope is to eventually apply these quality measures to the RISE registry, which will provide feedback to rheumatologists who are providing care to patients with lupus. The goal is to improve outcomes by improving quality care.”
Patient-Reported Outcomes
The second work group’s core team consisted of an expert work group, primarily physicians and researchers, along with “a wonderful and extremely brilliant patient, Wendy Rogers,” Dr. Yazdany says. The patient involvement didn’t end there. “We also had a full patient advisory group that participated in parallel with the expert work group, and the patient advisory group commented, provided feedback and voted every single step of the way, so the advisory group’s voice has profoundly influenced the measures that we ended up with.”
To determine which PROs to include, the expert work group pored through the foundational literature to identify outcome domains important to patients with SLE. With input from the patient advisory group, they selected the domains they felt were most valuable in providing patient care. After additional rounds of discussions, the work group identified depression and physical function as domains that should be part of the minimum standard of care for every patient. The work group detailed the selection process in an article published in January in Arthritis Care & Research.4
The expert work group and patient advisory group recommended:
- Assessment for depression at least once a year using the Patient Health Questionnaire or Patient Reported Outcomes Measurement Information System (PROMIS) depression scales;5,6 and
- Assessment of physical function at least once a year with the PROMIS physical function scales or the Multi-Dimensional Health Assessment Questionnaire (MDHAQ).7
