Posts Tagged ‘Patient reported outcome measure’

  • Why Rheumatoid Arthritis Frailty Matters

    Discussion of recent research on rheumatoid arthritis frailty. How frailty is measured, and which aspects of rheumatoid disease relate with frailty.

  • Genetics & Rheumatoid Disease: More Complicated Than Cancer?

    No one wants complicated answers, of course. But some answers are complicated, with multiple layers or causes. Like Rheumatoid Disease and childhood hearing loss. Instead of differing experiences of patients being  suspect, they should be valuable clues to answers we all seek. Answers and more questions The past few months have been a slow process […]

  • Blood Tests for Rheumatoid Arthritis: What Is Their Role?

    Probably the RAW article most often referenced is Blood Tests for Rheumatoid Arthritis, part 2 from over four years ago. People need answers to questions like: My blood tests show I’m in remission, so why do I still have symptoms? My doctor said I tested negative for RA, but could I still have it? What […]

  • PCORI – Creating a Culture for Patient-Centered Research

    Note! For more snapshots including the posters summarizing the PCORI workshop – click here. This weekend I attended a PCORI workshop called Transforming Patient-Centered Research: Building Partnerships and Promising Models. I’ve watched some PCORI meetings in the past since they use live stream webcasts to provide transparency. Here are some of my impressions regarding the […]

  • Red Feet, Frankenstorm, Unexpected Sympathy, and Travel to PCORI Workshop

    Tiger and I left home for the PCORI conference today in D.C. in spite of the fact that many in the D.C. are evacuating from the area! Schools were closed on the Space Coast due to Hurricane Sandy, dubbed #Frankenstorm. In Florida, Sandy wasn’t as big a deal as the half a dozen other hurricanes […]

  • The HAQ’s, the RAPID’s & the Rest: 3 Reasons It’s a Moot Point

    So often when I’m listening to a scientific presentation about clinical care for Rheumatoid Arthritis, I would do the face-palm head-smack, if my shoulder would let me. Depending on who can hear me, I mutter softly or wail sarcastically, “If it’s not done, does this matter?” One example is measuring RA disease activity, especially with […]

  • A Paradigm Shift in Rheumatoid Arthritis Disease Activity? Part 3

    In Part 1, we pointed out that patients and clinicians look at Rheumatoid Arthritis disease activity in different ways. Rheumatologists especially focus on joints, and actually particular kinds of joint activity. Patients face much more with regard to disease activity, as reflected in the post and comments page. In Part 2, we looked at two […]

  • Can We Find Similarities with Rheumatoid Arthritis?

    Very often with Rheumatoid Arthritis, we emphasize our differences. It helps the newly diagnosed to get over the shock of living with a new symptom every day. It helps explain a fickle disease that is quite unreasonable and undemocratic in its attacks. But what about our similarities? Common threads and similarities in Rheumatoid Arthritis As […]

  • Evidenced-based Medicine or Easy-bake Oven: Tension Between Evidence and Reality

    This post was inspired by the article Patient Advocates: Flies in the Ointment of Evidenced Based Care by Jessie Gruman at Health Affairs Blog. Patient advocacy and evidenced-based medicine are both intimately entwined with several matters in rheumatological care, but first a word about flies. Patient advocates probably are flies in the ointment, and there […]

  • Measuring Rheumatoid Arthritis Disease Activity

    Did you ever go to the store for milk and bananas? And come home with frozen pizza and ice cream? Sometimes I spend a couple of hours looking for something and discover something else that’s worth bringing back to you. That’s how I found this ten year old article about the dilemma of measuring Rheumatoid […]

  • Winter Solstice Lunar Eclipse: Was the Moon Really Red?

    What would a lunar eclipse on the solstice be without my beloved camera? I pulled my thickest Redskins blanket over my head and went to sleep on the sofa with all of the lights on. The lunar eclipse on the winter solstice was a once in a lifetime event I would surely not miss. When […]