Disease control and health-related quality of life in juvenile idiopathic arthritis
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Michael Seid1, Lisa Opipari, Bin Huang
1Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio 45229-3039, USA. michael.seid@cchmc.org
Insights
Many children with juvenile idiopathic arthritis (JIA) experience suboptimal health-related quality of life (HRQOL), even with minimal symptoms or biologic treatment. Assessing HRQOL is crucial regardless of clinical status in JIA patients.
Area of Science:
- Pediatric Rheumatology
- Quality of Life Research
- Clinical Symptomatology
Background:
- Juvenile idiopathic arthritis (JIA) significantly impacts children's lives.
- Health-related quality of life (HRQOL) is a critical outcome measure in chronic pediatric conditions.
- Variability in HRQOL among JIA patients, even those with minimal symptoms, warrants investigation.
Purpose of the Study:
- To investigate health-related quality of life (HRQOL) variability in children with juvenile idiopathic arthritis (JIA).
- To assess HRQOL in JIA patients with no or minimal clinical symptoms.
- To evaluate HRQOL in a subgroup of polyarticular JIA patients treated with biologic agents for 12 months.
Main Methods:
- Analysis of a JIA patient database (n=524, 2,354 patient visits).
- Defined patient samples based on minimal/no symptoms across four key measures.
- Utilized the Pediatric Quality of Life Inventory (PedsQL) to determine suboptimal HRQOL percentages.
Main Results:
- Suboptimal HRQOL was reported by 20.6% (self-report) and 25.7% (parent-report) of visits with at least one minimal symptom indicator.
- Among visits with all four minimal symptom indicators, suboptimal HRQOL was reported by 7.9% (self-report) and 10.7% (parent-report).
- In polyarticular JIA patients on biologics for 12 months, 25.9% (self-report) and 35.7% (parent-report) experienced suboptimal HRQOL.
Conclusions:
- A significant proportion of JIA patients with minimal clinical symptoms report suboptimal HRQOL.
- Suboptimal HRQOL is also prevalent in JIA patients undergoing biologic treatment.
- HRQOL assessment should be independent of clinical status due to unexplained variability.
Objective:
To examine variability in health-related quality of life (HRQOL) in children with juvenile idiopathic arthritis (JIA) experiencing no or minimal clinical symptoms, and in a subgroup with polyarticular JIA treated with biologic agents for 12 months.
Methods:
We defined 3 samples using a database of patients ages 2-18 years with JIA (n = 524; patient visits [PV] = 2,354): visits (PV = 2,155) with no or minimal clinical symptoms on at least 1 of 4 measures (active joint count, pain, physician global disease rating, Childhood Health Assessment Questionnaire); visits (PV = 941) with no or minimal symptoms on all 4 measures; and children (n = 31) with polyarticular JIA treated with biologic agents for 12 months. HRQOL was measured using the Pediatric Quality of Life Inventory (PedsQL) and the percentage of patients with suboptimal HRQOL was determined.
Results:
In PV with a PedsQL score, suboptimal HRQOL by self-report occurred in 362 (20.6%) PV with at least 1 indicator of minimal symptoms, and in 64 (7.9%) PV with all 4 measures indicating minimal symptoms (519 [25.7%] and 95 [10.7%], respectively, by parent report). For children with polyarticular JIA treated for 12 months with biologic agents, 7 (25.9%) patients by self-report and 10 (35.7%) patients by parent report were in the suboptimal range of HRQOL.
Conclusion:
A substantial percentage of patients with JIA who report no or mild clinical symptoms experience suboptimal HRQOL. This is also true for patients with polyarticular JIA treated with biologic agents for 12 months. Although disease activity and clinical symptoms are related to HRQOL, considerable unexplained variation in HRQOL exists. HRQOL needs to be assessed independently regardless of clinical status.
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