Treating children with juvenile idiopathic arthritis (JIA) helps them to achieve a quality of life comparable to that of any healthy child, and that is a realistic clinical goal, a German study shows.
The study, “The majority of patients with newly diagnosed juvenile idiopathic arthritis achieve a health-related quality of life that is similar to that of healthy peers: results of the German multicenter inception cohort (ICON),” was published in the journal Arthritis Research & Therapy.
Current JIA treatment focuses on relieving disease symptoms like stiffness, pain and swelling to prevent long-term joint damage. But helping young patients attain an optimal health-related quality of life is also an important clinical goal.
To better understand their life quality issues and challenges, researchers followed a group of children newly diagnosed with JIA during the first three years of pediatric rheumatologic care. These children were enrolled within one year of diagnosis at one of 11 rheumatology sites across Germany, all taking part in a cohort study called ICON .
Data on 953 JIA children (mean age, 7.9 ) and 451 healthy peers (mean age 8.4 years) were analyzed. All the children being treated for their disease with standard care, namely glucocorticoids, non-steroidal anti-inflammatory drugs (NSAIDs), or disease-modifying anti-rheumatic drugs (DMARDs).
Parent- and physician-reported global assessment and number of active joints involved were used to calculate the clinical Juvenile Arthritis Disease Activity Score (known as cJADAS-10; its range is 0-30). The higher the score, the worse the disease activity.
The physical, social, emotional, and school functioning of the patients and healthy peers were evaluated using the pediatric quality of life inventory generic core scales 4.0 (PedsQL; range 0-100). The PedsQL was completed by parents at each visit and was used to assess the health-related quality of life — a higher score indicates a better quality of life.
At the three-year follow-up, a significant decline in cJADAS-10 scores was seen in JIA patients compared to scores reported at the study’s start (a decrease from 9.8 to 2.7), indicating improvement or lower disease activity levels. In addition, an increase in PedsQL score to 87.3, from a baseline value of 71.7, was also observed in these young patients, indicating a better quality of life than at study start.
Based on data from healthy peers, a PedsQL value equal or higher than 79.3 was considered a favorable health-related quality of life score. The study reported that 76% of JIA patients attained this score, with a mean PedsQL value of 93.6 within the first three years of treatment.
After three years of care, no significant difference in health-related quality of life was seen between JIA patients and their peers, the researchers reported. Of note, a minor but significant difference remained in terms of physical health between children with JIA and those without this disease.
“After 3 years of pediatric rheumatology care, JIA patients have almost the same quality of life as healthy peers. This is a crucial finding for the counseling of patients and their parents,” the researchers wrote.
The team identified that higher pain levels, poorer well-being, and a higher family burden (referring to the impact of caregiving) at study start were risk factors for a poorer health-related quality of life after three years of rheumatologic care.
“It is therefore important to look for these risk factors in clinical practice to be able to set the course at an early stage of the disease with targeted support measures,” the researchers suggested.
The influence of a specific treatment on the patient’s quality of life was not assessed in the study, but the team concluded that “under current therapeutic conditions, an HRQoL [health-related quality of life] corresponding with that of healthy children is a realistic treatment goal in JIA.”