In spite of treatment advances including biologics, children affected by Rheumatoid Disease still experience pain, stiffness, and fatigue that impacts their ability to function. The disease may not be as “controlled” as many doctors presume. This may not be news to you as a patient or caregiver, but as these researchers point out, it needs to be recognized to improve clinical care and research.
Disabling pain, fatigue, and stiffness typically continue even with aggressive treatment
A study in North Carolina with 59 children diagnosed with Juvenile Idiopathic Arthritis (JIA) reported symptoms over one month using an electronic diary (e-diary). Diary entries included rating intensity of pain, stiffness, and fatigue, as well as functional limitations, three times a day. Five points will help highlight the significance of this study.
1) The symptom reports in the e-diaries
Pain was reported on 66% of all diary entries. No children were pain-free. High pain intensity was reported on 31% of all diaries, with 86% reporting high pain at least once. Averages of all entries (pain, stiffness, and fatigue intensity) were in the mild to moderate range.
2) “In-the-moment, higher pain and stiffness intensities uniquely predicted higher concurrent functional limitations.”
The researchers learned that it is important to consider not only a pain intensity score, but also the number of painful locations when predicting how a person with Rheumatoid Disease (PRD) can function. “The number of painful body locations reported at any given time predicted functional limitations at that time, above and beyond the effects of pain intensity, t(3039) = 8.44, p < .01.”
Ditto for stiffness.
IF THIS ONE FACT WERE RECOGNIZED, IT WOULD IMPROVE CLINICAL CARE DRAMATICALLY.
3) Biologics were not better than DMARDs
The researchers failed to detect significant differences in symptoms based on medication class. “Medication class did not reliably predict differences in symptom intensity even though 79% of children were prescribed a DMARD and 47% a biologic.” The exception was that children using scheduled NSAIDs had lower fatigue intensity ratings.
4) Disease activity is not controlled by modern treatments
THIS POINT IS OBVIOUS TO ANYONE OBSERVING THE #RHEUM COMMUNITY OR COMMUNICATING WITH SUPPORT GROUPS FOR KIDS OR ADULTS WITH RHEUMATOID DISEASE (RD); I’VE MENTIONED IT IN EVERY SPEECH I’VE GIVEN.
“However, these results raise new questions about the effectiveness of contemporary aggressive therapy in preventing or limiting disease symptoms. Moreover, disease activity may not be as well controlled as presumed by health care providers based solely on physical examination and laboratory assessment.”
5) Pain, stiffness, and fatigue intensity should be assessed routinely
The researchers concluded that routine assessments of symptoms experienced by juvenile Rheumatoid patients should be included in both routine clinical care and in assessments of treatment efficacy in clinical trials.
Adult studies with similar results
A Rheumatoid Patient Foundation (RPF) survey confirmed most adult PRD live with RD symptoms, despite treatments: “Only 8 percent of respondents stated that their symptoms were completely relieved by DMARD or biologic treatments, while 36% of patients stated that they continue to live with a lot of symptoms regardless of any treatments.”
See also: the 2013 Swedish study on “remaining pain.”
Postblog: I get excited when I see studies that confirm what patients and caregivers have always known and often attempted to communicate. For about five years, RAW has sought to address gaps between the reality of RD and what is often taught and believed in rheumatology. As a mom, I hold in my heart families of young people living with Rheumatoid Disease (YPRD) who have contacted me because they were dismayed to experience symptoms despite treatment or face doctors who do not understand it.
Rheumatoid Awareness Day is just two weeks away – February 2.
This year patients and organizations across the U.S. and in other countries are observing the second ever awareness day for RD. For updates on RPF sponsored Awareness Day events – click here. If you have a blog of any kind, please join our special blog carnival – What Would Rheumatoid Awareness Mean to You?
1 Bromberg MH, Connelly M, Anthony KK, Gil KM, Schanberg LE. Self-Reported pain and disease symptoms persist in juvenile idiopathic arthritis despite treatment advances: An electronic diary study. Arthritis & Rheumatology [Internet]. 2013 Oct 3 [Accepted article cited 2014 Jan 21]. Accessed from: http://onlinelibrary.wiley.com/store/10.1002/art.38223/asset/art38223.pdf?v=1&t=hqpyz4kz&s=31bdc1f80829d7755d389b30da70b61f4195fb55. DOI 10.1002/art.38223
Link to abstract: http://onlinelibrary.wiley.com/doi/10.1002/art.38223/abstract
2 Rheumatoid Patient Foundation. Unmasking rheumatoid disease: the patient experience of rheumatoid arthritis. A white paper from the Rheumatoid Patient Foundation. Rheumatoid Patient Foundation [Internet]. 2013 Apr 20 [cited 2013 Aug 3]. Available from: http://rheum4us.org/wp-content/uploads/2013/04/Unmasking-Rheumatoid-Disease-The-Patient-Experience-of-Rheumatoid-Arthritis-White-Paper.pdf
- Inside Story of a Young Person Living with Juvenile Rheumatoid
- Some Rheumatologists Don’t Understand How Much It Hurts
- Remaining Pain with Rheumatoid Arthritis Treatment
- What Would Rheumatoid Awareness Mean to You?