A recent trend to incorporate patient-reported outcomes (PROs) in clinical research, and ultimately clinical practice, is a response to the need to better measure and treat what patients truly care about, and adapt to the changing healthcare environment, which increasingly includes patient satisfaction as a key metric for overall quality of care, a metric tied to such issues as reimbursement.
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Explore This IssueDecember 2015
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In rheumatology, including PROs in research and practice is particularly important given the nature of inflammatory diseases, says Yasser El Miedany, MD, consultant rheumatologist at Medway Maritime Hospital in Kent, United Kingdom, and honorary senior clinical lecturer at King’s College in London, who has written numerous articles about patient-centered care in rheumatology.1-3
“In inflammatory arthritic conditions, excluding gouty arthritis, there is not a single ‘gold standard’ measure to assess outcomes,” says Dr. El Miedany, adding that the introduction of biologics and the recently adopted treat-to-target concept has changed the way clinicians look at these conditions and the short- and long-term impacts they have on patients’ lives.
“The success achieved over past years in controlling disease activity draws attention to other outcomes, such as quality of life, ability to work and absence from work because of the arthritic condition, as well as co-morbidities,” he says.
To fully implement patient-centered care, therefore, requires gathering information from patients about their experience with their condition and developing valid and reliable metrics to measure what traditionally have been viewed as soft data or subjective experience. To that end, the European League Against Rheumatism (EULAR) recently recommended involving patients in research.4
An example of efforts underway to involve patients in research comes from Johns Hopkins University in Baltimore where investigators—collaborating with a broad range of stakeholders worldwide—have been working to develop a metric to quantify and qualify patients’ experience with rheumatoid arthritis (RA) flares.
Creating a Patient-Centered Care Model for RA Flares
Since 2006, Clifton O. Bingham, III, MD, associate professor of medicine at Johns Hopkins University and director of Johns Hopkins Arthritis Center, and Susan Bartlett, PhD, associate professor of medicine at McGill University in Montreal and adjunct associate professor at Johns Hopkins, have worked with a worldwide consortium to better understand and develop a standardized outcome measure for RA flares.