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

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Patient Experience and Rheumatoid Disease

unmasking-rheumatoid-disease-white-paper-2This 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 understand this disease better. Many of you also participated in a 2011 Rheumatoid Patient Foundation (RPF) survey about your experiences with Rheumatoid disease.

Last week RPF published a white paper which included results of the survey, Unmasking Rheumatoid Disease: The Patient Experience of Rheumatoid Arthritis. Previously, an overview of results was presented in a poster for the RPF exhibit at the 2012 American College of Rheumatology meeting. The RPF is grateful to everyone who participated in the original survey which made this report possible. From the RPF:

The survey results revealed a wide array of patient experiences, many of which fall outside of the typical model of RA that is presented in current medical literature. For example, although exercise is often touted as being beneficial for RA by improving mobility and lessening symptoms, two thirds of the participants reported that exercise caused an increase in RA-related pain.The survey data also challenge the concept of “morning stiffness” that tends to go away after a patient gets out of bed and begins his or her day, as well as the perception that joint damage and swelling are directly related.The patient responses recorded from this survey indicate that the majority of patients continue to live with pain and symptoms from RA, despite receiving disease treatment.


A professional’s perspective on patient experiences

Late in 2011, at the same time many of us were answering the original survey, Dr. Ted Pincus wrote an important editorial: The Science of MDHAQ/RAPID3 Scores: Do patient self-reports provide valid data for evidence-based care in rheumatology practice?

Some of his words will resonate with many of you:

Concerning the importance of patient self-reports:

“Self-report questionnaires could document patient history information concerning physical function and pain as quantitative scores, rather than as gestalt, nonquantitative descriptions (e.g., ‘ “doing well” while the patient has become progressively crippled before their eyes’). Standard, quantitative, patient self-report data could meet criteria for ‘scientific’ measures, similar to laboratory tests.”

Concerning how seldom patient self-report questionnaires are used in rheumatology practice:

“Patient self-report questionnaires—the most significant predictor of work disability and mortality in RA—have been introduced into only about 20% of rheumatology usual care settings”

Concerning how textbook opinions can vary greatly from patients’ reality:

“Treatment at that time, although described as ‘remission-inducing’ in textbooks, was not adequate for favorable long-term results.”

That change is slow.

“Nonetheless, most rheumatology visits are conducted largely as they were 50 years ago when I started in rheumatology as a student”

Connecting the dots

Dr. Pincus has been quoted several times on RAW over the past four years because his work improving and supporting patient questionnaires has been invaluable. RPF patient surveys are also a crucial step toward improving understanding of Rheumatoid disease, which will ultimately be needed to improve care. Significant change cannot come until actual patient experiences with the disease are recognized generally, and considered in individual patients.

Postblog: The Pincus article is also an insightful story of his own journey, like an onset story to becoming a patient reported outcomes researcher. I love also reading much older medical history and I’ve recently read a lot of it in research for a book I’m writing on Rheumatoid disease. One research article led me to a book by a patient, written 60 years ago. I’ll post more on that I hope, but I’m somehow comforted by her story: to know that things patients in this community experience, that are often disputed or discounted as atypical or wrong, were also experienced by her. Maybe another result of the white paper will be to reassure patients.

Recommended reading

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Kelly Young. All rights reserved.

This entry was posted on Tuesday, April 30th, 2013 at 1:50 pm and is filed under Special Occasion, The Real Rheumatoid Disease. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.


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