Lupus patients endorse PROMIS assessment tool as relevant, valuable

November 6, 2017, Hospital for Special Surgery

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 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 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.

Explore further: Patient reported outcome measurement system (PROMIS) valid in assessing patient experience

More information: Relevance and Utility of Patient Reported Outcomes Measurement Information System (PROMIS®) Instruments in SLE: A Qualitative Study [abstract]. Arthritis Rheumatol. 2017; 69 (suppl 10).

Related Stories

Patient reported outcome measurement system (PROMIS) valid in assessing patient experience

November 7, 2015
A study at Hospital for Special Surgery (HSS) evaluating the Patient Reported Outcomes Measurement Information System (PROMIS) in patients with lupus finds that the questionnaire is valid in assessing subjective patient experience. ...

Omega-3 and Omega-6 fatty acid intake may affect lupus outcomes

November 5, 2017
Higher intake of omega-3 fatty acids was associated with better sleep quality and a decrease in depressive symptoms in lupus patients, among other patient-reported outcomes, according to new research findings presented this ...

Orthopaedic surgeons use new patient-focused measures to assess outcomes

November 1, 2016
Orthopaedists traditionally rely on X-rays, MRI, CT scans, physical measurements, and functional tests for patient outcomes assessments, but this is changing thanks to new technology that communicates ongoing, real-time outcomes ...

Digital coaching increases RA patients' medicine adherence and health while reducing flares

November 5, 2017
A 12-week, digital health coaching program with personalized support from a dedicated health coach improved well-being and decreased symptoms for participants with rheumatoid arthritis, according to new research findings ...

How bad does it hurt? New research helps children suffering from chronic pain conditions

December 9, 2015
A new study describes the development of pediatric pain measures for a National Institutes of Health Initiative aimed at helping doctors better evaluate and therefore better treat children who cope with chronic pain. Based ...

Obesity linked with depressive symptoms, increased disease activity in women with lupus

November 5, 2017
Obesity is independently associated with worse patient-reported outcomes in women with systemic lupus erythematosus, including disease activity, depressive symptoms, pain and fatigue, according to new research findings presented ...

Recommended for you

How environmental pollutants and genetics work together in rheumatoid arthritis

April 19, 2018
It has been known for more than three decades that individuals with a particular version of a gene—human leukocyte antigen (HLA)—have an increased risk for rheumatoid arthritis.

The bugs in your gut could make you weak in the knees

April 19, 2018
Bacteria in the gut, known as the gut microbiome, could be the culprit behind arthritis and joint pain that plagues people who are obese, according to a new study published today in JCI Insight.

Researchers identify peptide produced during cartilage deterioration as a potential source of osteoarthritis pain

April 11, 2018
Osteoarthritis is one of the most common causes of chronic pain in the world. More than 30 million people in the United States alone suffer from osteoarthritis, or OA, which can affect any moveable joint of the body, including ...

Flare-responsive hydrogel developed to treat arthritis

April 3, 2018
Arthritis flares - the unpredictable and often sudden worsening of arthritis symptoms—can be debilitating. These episodes can make the management of inflammatory arthritis, which includes rheumatoid arthritis and psoriatic ...

Drug compound shows promise against rheumatoid arthritis

March 28, 2018
Scientists have designed a new drug compound that dials down inflammation, suggesting possible future uses against autoimmune disorders such as rheumatoid arthritis.

Chromosomal loop signatures could identify poor drug response in arthritis

March 28, 2018
Chromosomal loop signatures found in blood samples obtained in early rheumatoid arthritis could identify patients that will not respond adequately to 'anchor' treatment drug methotrexate.

0 comments

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.