(ACR2014) (VIDEO) The National Institutes of Health's PROMIS measures, created to study health status in the general population, look good for meaningful outcomes assessment in diseases such as rheumatoid arthritis, says an expert who studies measurement of disability in rheumatic disorders..
Rheumatoid arthritis (RA) is close to being a curable condition, yet the classic measures of disease status assume such a high level of disability that many patients today score as more or less normal. So how can rheumatologists and researchers continue to assess outcomes in a meaningful way?
In this video conversation, Patricia Katz PhD describes the potential of the new PROMIS (Patient Reported Outcomes Measurement Information System) measures created by the National Institutes of Health for assessment of patients with rheumatic disease in 2015.
Dr. Katz is Professor in Residence at the Division of Rheumatology of the
University of California San Francisco Medical Center. Her research has focused on health policy, and for the last decade she has studied the measurement of disability in RA and lupus.
For the past decade Dr. Katz’s research has focused the development of disability in life activities and the role of functional decline, defined both traditionally and to include a broader range of life activities, as a risk factor for the development of depressive symptoms. She has received NIH funding to examine the relationship of different ways of coping with rheumatoid arthritis (RA) to functional decline, health status, and health care utilization; parenting disability and psychological well-being among individuals with RA; and disability in valued life activities and psychological outcomes among persons with RA, systemic lupus erythematosus, and obstructive lung disease. More recently, her research has examined the role of body composition and obesity in development of disability among individuals with RA and lupus. - See more at: http://healthpolicy.ucsf.edu/people/patti-katz-phd#sthash.iSkcKIFs.dpuf
Your presentation focuses on the PROMIS measures. Can you remind listeners what the PROMIS measures are, please?
Are these the basis of some of the studies that tell us, for instance, that patients with RA can actually feel lousier than some patients with cancer? Is that the sort of thing you can do with the PROMIS measures?
In your study that you reported here at ACR, what were you trying to establish?
And what did you find?
Is the intention that these measures will be used mostly in clinical trials? Should your listeners be looking to read them in studies, or is it anticipated that doctors will actually be asked to use these to measure their patients' status?
How do you think it may add to clinicians' abilities to assess outcomes in rheumatic disease compared to, say, RAPID3 or whatever may already be administered?
The HAQ was developed in the 1980s, and at that time it was very representative of how the disease was and what the projected outcomes were. But today patients have bigger expectations of what they want to be able to do ... I don't think anyone's going to be selling you an outcome that's going to make you able to drink from a cup.
The second thing we looked at was whether the PROMIS measures correlated with some of these traditional measures and we found that they did. So they are measuring the same concepts.
EPIC which is one of the big medical records companies is now incorporating the PROMIS measures. One of our rheumatology clinics has been administering the short form for I think about a year ... and found that it was really superior to the HAQ.
If physicians are open to monitoring, the PROMIS I think will be a better measure in the long run... It corresponds more with what patients are interested in, and it's more able to detect changes, particularly improvements.
1. Katz PP, Pedro S, Michaud K. Test of the NIH Patient-Reported Outcomes Measurement Information System (PROMIS) 29-Item Profile in a Large Cohort of Rheumatic Disease Patients. ACR Abstract 890. 2014 66:S1306. Abstract Supplement, 2014 ACR/ARHP Annual Meeting
2. Wahl ER, Gross AJ, Chaganti R et al. Less Is More: The Shorter Physical Function Measure Promis-PF10a Outperforms HAQ in an Ethnically Diverse, Urban Rheumatoid Arthritis Clinic Population. ACR Abstract 420 2014 66:S1306. Abstract Supplement, 2014 ACR/ARHP Annual Meeting
3. Nagaraja V, Berrocal V, Connolly K et al. Comparison of PROMIS® survey Between Scleroderma Patients in an Academic Center and Patient-Based Scleroderma Foundations. ACR Abstract 2717 2014 66:S1306. Abstract Supplement, 2014 ACR/ARHP Annual Meeting