Patient reported outcome measure Archives | Rheumatoid Arthritis Warrior

Why Rheumatoid Arthritis Frailty Matters

March 7, 2017October 5, 2019 Kelly O'Neill 9 Comments Measuring rheumatoid disease activity, Patient reported outcome measure

What is rheumatoid arthritis frailty? The word frailty suggests a serious level of health vulnerability. In medical terms, frailty often describes a range of conditions in elderly people: “frailty comprises a collection of biomedical factors which influences an individual's physiological state in a way that reduces his or her capacity to withstand environmental stresses.”1 Frailty expresses...Continue reading 9 Comments » Read more

Genetics & Rheumatoid Disease: More Complicated Than Cancer?

January 27, 2014October 5, 2019 Kelly O'Neill 10 Comments Genetics and RA, Patient reported outcome measure

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 of diagnosis...Continue reading 10 Comments » Read more

Blood Tests for Rheumatoid Arthritis: What Is Their Role?

October 17, 2013May 14, 2018 Kelly O'Neill 18 Comments Blood test for RA/ Rheumatoid Disease, Patient reported outcome measure

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 is the role...Continue reading 18 Comments » Read more

RPF White Paper Indicates Patient Experiences Differ from Typical Perceptions of Rheumatoid Arthritis

April 30, 2013April 20, 2019 Kelly O'Neill 18 Comments Patient reported outcome measure, Research on Rheumatoid Arthritis, Rheumatoid Patient Foundation

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 to...Continue reading 18 Comments » Read more

PCORI – Creating a Culture for Patient-Centered Research

October 29, 2012May 14, 2018 Kelly O'Neill 11 Comments Patient advocacy, Patient reported outcome measure, PCORI

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 weekend...Continue reading 11 Comments » Read more

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

October 27, 2012May 14, 2018 Kelly O'Neill 5 Comments e-patient, Patient advocacy, Patient reported outcome measure, PCORI

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 we’ve...Continue reading 5 Comments » Read more

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

November 28, 2011May 15, 2018 Kelly O'Neill 43 Comments Measuring rheumatoid disease activity, Patient reported outcome measure, Research on Rheumatoid Arthritis

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...Continue reading 43 Comments » Read more