August 5, 2019

A new study conducted at Hospital for Special Surgery (HSS) showed that the PROMIS® (Patient-Related Outcomes Measurement Information System) health survey can be used to measure and monitor patients’ experience of lupus that are not captured by standard questionnaires.

Researchers gave 223 people with lupus who get their outpatient care at HSS the PROMIS10 survey at the first visit and then again at least one month later. The patients also completed the standard survey called Short Form-36. Results showed that PROMIS10 was able to track patients’ improving or worsening of physical and mental health status over time. But it did not match the Short Form-36 for finding changes in physician-reported measures of disease activity.

PROMIS® is part of the National Institutes of Health Roadmap program which aims to develop an efficient state-of-the-art assessment system for self-reported health.

Study authors, who included an LRA Lupus Luminary Dr. Lisa Sammaritano, concluded “PROMIS10 showed responsiveness over time to patient‐reported, but not physician‐assessed changes in lupus health status. These data suggest that PROMIS10 can be used to efficiently measure and monitor important aspects of the patient experience of lupus not captured by standard physician‐derived metrics. Further studies are needed to evaluate the role of PROMIS10 in optimizing longitudinal disease management in SLE and to determine its responsiveness in other chronic health conditions.”

The paper was published in Arthritis Care & Research.