Lupus patients endorse PROMIS assessment tool as relevant, valuable

A study at Hospital for Special Surgery (HSS) evaluating the Patient Reported Outcomes Measurement Information System (PROMIS) finds that patients with lupus endorse the assessment tool as relevant, valuable and potentially useful in improving clinical care.

The study was presented at the American College of Rheumatology/Association of Rheumatology Health Professionals annual meeting on November 6 in San Diego.

The National Institutes of Health assessment tool known as PROMIS seeks to measure the impact of disease on quality of life. It evaluates physical, psychological and social well-being to provide information on the subjective patient experience.

"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."

For the study, adult outpatients were recruited from the Lupus Center of Excellence at HSS. They completed computerized PROMIS questions and participated in focus groups (women) or structured interviews (men). Focus groups and interviews explored the relevance of PROMIS questions, the potential value of PROMIS instruments in routine medical care, and identified missing content areas that patients thought were important.

Twenty-eight women and four men with lupus participated in four focus groups and structured interviews. Participants reported that PROMIS assessments reflected their experience with lupus. Women prioritized domains of fatigue, pain interference, physical function, sleep disturbance, and cognitive abilities as most relevant to them, while men selected fatigue, sleep disturbance, anxiety, pain interference, and pain behavior.

"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," Dr. Mandl noted. "They also thought it was important for doctors to review patients' PROMIS answers with them."

Regarding issues not addressed in PROMIS, women indicated that they would like to see questions on body image, intimate relationships, pregnancy, and relationships with providers. Men indicated that they would like to see a greater emphasis on mental health in the questionnaire.

Dr. Mandl and colleagues noted that further studies are essential to explore how to most effectively integrate PROMIS measures into routine patient care.