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…
Despite a generation of advances in molecular biology, a huge gap exists between the Sjögren’s syndrome (SS) patient’s description of their symptoms and the objective findings. Current issues include: Many SS patients are misclassified as either rheumatoid arthritis (RA) or systemic lupus erythematosus (SLE), even within rheumatology clinics. Frequently, the sickest SS patients with extraglandular…
In the late 1990s, Thomas Baranowski, PhD, professor of pediatrics specializing in nutrition at the Baylor College of Medicine, Houston, applied for a grant. For years, he had been interested in finding ways to get children to change their diet and physical activity. He decided to try a video game, and he got the money…
I am a few weeks post-retirement. Having written thank you notes and completed urgent home projects, I swing in a hammock at our currently fire-threatened cabin north of Winthrop, Wash., and reflect. I feel like a young boy while freely flipping pages of a hand-scribed picture book, The Principles of Uncertainty, by Maira Kalman. She…
Receipt of an unsolicited communication that a sweepstakes award has been won may con some people (especially, but not limited to, those underprivileged or undereducated as to legalities), but can’t fool all of the people all of the time. The names of the organizations and products involved are often marketing tool inventions, which imply special…
For the past 16 years, the website, creakyjoints.org, founded by arthritis patient Seth Ginsberg and social entrepreneur Louis Tharp, has offered arthritis patients and their families a safe online community where they can receive meaningful support and education. In March, the online portal added a new initiative—Arthritis Power, the first-ever patient-led, patient-generated, app-based research registry…
Fibromyalgia syndrome (FMS) is a condition characterized by widespread pain, abnormal pain processing, sleep disturbance and fatigue. It is commonly associated with psychological distress and co-morbid conditions. Impaired cognition is common in individuals with FMS, and is often referred to as fibrofog.1 According to the U.S. Centers for Disease Control and Prevention, the prevalence of…
New research explores the correlation between insomnia and pain in patients with knee osteoarthritis (OA). After conducting a multimodal sleep study, researchers from Johns Hopkins University in Baltimore uncovered a combined effect between catastrophizing and disturbed sleep, resulting in increased pain sensitivity, specifically central sensitization, for knee OA…
It takes a great deal of time and money to produce clinical practice guidelines for rheumatic diseases. No matter how well a treatment inhibits inflammatory cytokines, it won’t lower disease activity without one essential factor: patient compliance. “You can’t propose a treatment algorithm in your research that no patient would actually use,” says Veena Ranganath,…
Every day, rheumatology patients live with the realities of having a chronic disease that requires a lifetime of treatment. This knowledge can be an emotional burden, and some people deal with it better than others. Emerging research is showing that those patients who exhibit emotional control are better able to cope and ultimately experience a…