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Lupus Patients Endorse PROMIS Assessment Tool as Relevant and Valuable

San Diego, CA—November 6, 2017

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.

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

Authors: Shanthini Kasturi1, Madeline Epsten2, Adena Batterman2, Roberta Horton2, Juliette Kleinman2, Jillian Rose2, Jackie Szymonifka2, Laura Robbins2 and Lisa A. Mandl2
1Tufts Medical Center, Boston, MA, 2Hospital for Special Surgery, New York, NY

 

About HSS | Hospital for Special Surgery
HSS is the world’s leading academic medical center focused on musculoskeletal health. At its core is Hospital for Special Surgery, nationally ranked No. 1 in orthopedics (for the ninth consecutive year) and No. 3 in rheumatology by U.S.News & World Report (2018-2019). Founded in 1863, the Hospital has one of the lowest infection rates in the country and was the first in New York State to receive Magnet Recognition for Excellence in Nursing Service from the American Nurses Credentialing Center four consecutive times. The global standard total knee replacement was developed at HSS in 1969. An affiliate of Weill Cornell Medical College, HSS has a main campus in New York City and facilities in New Jersey, Connecticut and in the Long Island and Westchester County regions of New York State. In 2017 HSS provided care to 135,000 patients and performed more than 32,000 surgical procedures. People from all 50 U.S. states and 80 countries travelled to receive care at HSS. In addition to patient care, HSS leads the field in research, innovation and education. The HSS Research Institute comprises 20 laboratories and 300 staff members focused on leading the advancement of musculoskeletal health through prevention of degeneration, tissue repair and tissue regeneration. The HSS Global Innovation Institute was formed in 2016 to realize the potential of new drugs, therapeutics and devices. The culture of innovation is accelerating at HSS as 130 new idea submissions were made to the Global Innovation Institute in 2017 (almost 3x the submissions in 2015). The HSS Education Institute is the world’s leading provider of education on the topic on musculoskeletal health, with its online learning platform offering more than 600 courses to more than 21,000 medical professional members worldwide. Through HSS Global Ventures, the institution is collaborating with medical centers and other organizations to advance the quality and value of musculoskeletal care and to make world-class HSS care more widely accessible nationally and internationally.

 

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