Fatigue in Young Adults with Juvenile Idiopathic Arthritis
Researchers recently published an interesting new study “Fatigue in young adults with juvenile idiopathic arthritis 18 years after disease onset: data from the prospective Nordic JIA cohort” in Pediatric Rheumatology.
Severe fatigue in young adults with JIA
The study tracked children diagnosed with juvenile idiopathic arthritis (JIA) between 1997 and 2000 from areas of Norway, Sweden, Denmark, and Finland for 18 years (collecting data at three points in time) and compared to a control group population.
Differences in studied groups
Twenty-six percent of the total 377 young adults with JIA reported severe fatigue compared to just 12 percent of the control group.1
A greater burden of fatigue was reported from participants with sleep problems, poor health, reduced participation in school or work, physical disability, active disease, and use of DMARDs, biologics, and steroids. The participants without these problems had fatigue ratings similar to the control group.1
Predictors of fatigue
At all three time points, active disease was associated with higher fatigue scoring.
Predictors of fatigue at the 18-year point were: female sex and diagnostic delay of more than six months at disease onset, pain, self-reported poor health, active disease, and previous or ongoing use of DMARDs/biologics at the 8-year point.1
The researchers also described how fatigue is a significant symptom of JIA for young adults and can have a serious impact on daily function: “Despite efficient modern treatment, including biologics, many patients with JIA experience reduced health-related quality of life, and suffer from pain, physical disability and reduced participation in school and leisure activities in a long-term perspective.”1
Impactful data on fatigue
It’s quite refreshing to see such a comprehensive study over 18 years using three point-in-time follow-ups to track the impact of JIA disease and fatigue on children.
Although the study sample may not be huge and is limited to a geographic area, this data is still impactful for understanding the harm of fatigue and other JIA symptoms on quality of life for a good portion of patients.
Fatigue can harm JIA patients for a long time
I can relate to all these findings, of having active disease for many years correlated with the impacts of fatigue.
Of course, it makes sense that these symptoms would harm the ability to go to school or work and participate in life activities.
To me, I think the reported problems are likely interactive with fatigue. For example, disease activity contributes to fatigue, which also contributes to reduced participation in school, work, and leisure activities.
Aggressive treatments for active disease
Additionally, it makes sense to extrapolate that people with JIA who have better controlled (or less active disease) would experience less fatigue and fewer impacts on their quality of life.
But, it is not clear if the medications can be completely relied on to make this happen. The study seems to indicate that patients needing stronger treatments (such as DMARDs and biologics) may have more severe disease activity and, therefore, harsher symptoms.
This has certainly been my experience. When I was young, there were few treatments and they were not very effective in helping slow my disease and alleviate symptoms. As an adult when I had access to DMARDs and biologics, these treatments have helped, but I still continue to have active disease.
It may be just the nature of my JIA to be severe and creating a lot of symptoms, despite the treatments.
Better treatments for JIA patients
In addition, while the treatments help with my disease activity and symptoms, they don’t erase the impact (especially because I had severe disease for 20-plus years before having the newer treatments available to me) of the JIA.
This is actually a conversation I have had on multiple occasions with my rheumatologist.
Interested in continued tracking
I would be interested in continued tracking of these patients to see if they compare favorably over the long course with patients like myself who didn’t have treatments at a young age.
As they continue in life, will their fatigue, pain, and disease impacts be better than people like me? That is my hope! Of course, I’d rather they not have to cope with these problems at all.
Finally, I’d add that fatigue continues to be a troubling mystery. While treatments that succeed in quieting the active disease help, it doesn’t make fatigue and all the problems it causes disappear. So much more is left to be discovered in understanding and addressing the problem of fatigue.
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