Posts Tagged ‘Patient reported outcome measure’
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RPF White Paper Indicates Patient Experiences Differ from Typical Perceptions of Rheumatoid Arthritis
Patient Experience and Rheumatoid Disease This site has always been dedicated to “presenting the patient story in a way that may increase understanding of the disease by doctors and researchers” as one of its three goals. The Onset Story project has been an important part of that, both for patients and for healthcare professionals searching [...]
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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 [...]
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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 [...]
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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 [...]
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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 [...]
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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 [...]
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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 [...]
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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 [...]
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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 [...]
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20 Rheumatoid Arthritis Patient Facts I learned from RA Patients
Why I call them “Rheumatoid Arthritis patient facts” There were many things that didn’t add up as I started to read Rheumatoid Arthritis “facts.” What I read was not what I experienced. The more I heard from RA patients, the longer was the list of things I wondered about. I can’t believe I’m saying this [...]
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Weight of Patient Reported Outcome Measures on Diagnosis & Treatment of RA
Rheumatoid Arthritis Is the Only Major Disease in Which the Patient Largely Informs the Doctor A funny thing happened while we were at a poster session last week at ACR. The Georgia World Congress Center is like three 4-story shopping malls with a couple of theaters and secondary schools thrown in – it’s big. So, [...]
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The Value of Patient Reported Outcome Measures of Rheumatoid Arthritis
Are patient reported outcome measures useful for Rheumatoid Arthritis? Unfortunately, pain is invisible. I’ve fantasized that it should have a color so that it could be seen and measured objectively. However, pain is just as invisible as stiffness, weakness, and fatigue – the major symptoms of Rheumatoid Arthritis. How can we measure Rheumatoid Arthritis since [...]
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