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 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:
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.
- Weight of Patient Reported Outcome Measures on Diagnosis & Treatment of RA
- The Value of Patient Reported Outcome Measures of Rheumatoid Arthritis
- The HAQ’s, the RAPID’s & the Rest: 3 Reasons It’s a Moot Point