People with Lupus May Focus Most on Fatigue and Pain When Assessing Their Disease Activity
Researchers reviewed responses of people with lupus to Patient‐Reported Outcomes Measurement Information System (PROMIS) 4-item short form questionnaires regarding physical function, fatigue, pain interference, and participation in social roles. They found that only the fatigue and pain questionnaires were related to self‐reported lupus disease activity. Responsiveness to these symptoms suggests that fatigue and pain play a more dominant role in lupus patients’ assessments of disease activity.
PROMIS is a set of person-centered measures that evaluates and monitors physical, mental, and social health in adults and children. PROMIS scales can be used with the general population and with individuals living with chronic conditions. Level of responsiveness of the scales (i.e., how well the questionnaires measure changes in symptoms) indicates how useful the questionnaire may be in following health or symptoms over time.
Investigators administered five PROMIS short forms to a group of people with lupus in the FORWARD (The National Databank for Rheumatic Diseases) cohort. Overall, all of the scales were considered responsive to changes in the topic areas they were measuring. The lower responsiveness to physical function, participation in social roles, and sleep to changes in disease activity suggests that these measures are potentially viewed as less directly reflective of disease activity by people with lupus. The study also found that people with lupus aspire to health states equivalent to or better than the average population score (population mean ± 4‐6 points).
Patricia Katz, PhD, and lead study author shared, “We know that there are many symptoms of lupus that are not monitored on a regular basis but are important to people; for example, sleep problems. These short, 4-item scales can provide a way to measure these symptoms easily. Being able to monitor symptoms over time may help both people with lupus and their health care providers learn more about their disease. The results also shed light on how people with lupus may gauge their disease activity, focusing on pain and fatigue."
The responses of people with lupus regarding their physical, mental and social health living with the disease is meaningful to their treatment plan. These results support use and further study of PROMIS short forms in lupus, which means that these topics can be easily measured. Get more resources on tracking symptoms and their impact.