Researchers at the Hospital for Special Surgery (HSS) have found patients with lupus endorse the Patient Reported Outcomes Measurement Information System (PROMIS) as relevant and useful in improving clinical care.

Published by the American College of Rheumatology, the study evaluated the PROMIS assessment tool in its impact on quality of life as it measures physical, psychological and social well-being. Researchers surveyed men and women with lupus to gauge feelings on the tools and its capabilities while outlining possible areas for improvement.

"The measurement of patient-reported outcomes is a priority to achieve patient-centered high value care. This is particularly applicable to chronic systemic diseases such as lupus, which can have a significant ongoing impact on quality of life," said Lisa Mandl, MD, MPH, a rheumatologist at Hospital for Special Surgery and senior investigator. "The PROMIS tool provides additional information on what the patient is experiencing."

The study enrolled 28 women and four men with lupus who participated in interviews and focus groups, respectively. Questions covered the relevance of PROMIS, potential value of the tool in routine care and missing content areas.

Researchers found the women were more concerned with the factors of fatigue, pain interference, physical function, sleep disturbance and cognitive abilities while men focused on fatigue, sleep disturbance, anxiety, pain interference and pain behavior. Additionally, women wanted more content covering body image, intimate relationships, pregnancy and relationships with providers, while men reported wanting more emphasis on mental health.

"We found that study participants were enthusiastic about using PROMIS in their medical care, citing its utility in validating their experience, tracking symptoms and disease progression, facilitating communication with providers, and guiding treatment plans," Mandl noted. "They also thought it was important for doctors to review patients' PROMIS answers with them."