Background/Purpose:

Patients with Juvenile Idiopathic Arthritis (JIA) face physical, social, and emotional issues that affect their quality of life. Health-related quality of life (HRQoL) is a multidimensional construct including those issues and other influences of illness on well-being. Previous validation studies found that JIA patients have lower HRQoL compared to healthy peers. We investigated perceptions of HRQoL based on assessments completed by children and their caregivers at a large referral center. We obtained HRQoL data as an initial phase of a larger project striving to educate school nurses and staff at a large urban school district.

Methods:

We assessed HRQoL with the PedsQL 4.0 Generic Core Scale (assesses physical activity, emotional, social, and school functioning) and the PedsQL 3.0 Arthritis Module (measures pediatric rheumatology-specific HRQoL: pain and hurt, daily activities, treatment, worry, and communication). Both surveys have age-specific, validated forms (Ages 5-7, 8-12, and 13-18). After IRB approval, we enrolled a 3-month convenience sample of English speaking JIA patients ages 5 to 18, and caregivers who presented to an outpatient clinic. For each survey we calculated subscale and total score means. Higher scores indicated a better HRQoL. We used descriptive and inferential statistics (Pearson correlation, one-way ANOVA and one sample t-tests) to explore HRQoL data in JIA patients. Results were compared to validated healthy control normative values.

Results:

Seventy-nine JIA patients and caregivers completed the surveys. Demographic data included patient age (mean 12.05 ± 3.73), gender (female 68%), ethnicity (49% White or Non-Hispanic, 25% Hispanic). Patient JIA classification included: Polyarticular 46.8%, Oligoarticular 30.4%, Psoriatic 8.9%, Systemic 7.6%, and Enthesitis-related 6.3%. The cohort mean total score (72.27) was significantly lower than the previously validated total score for of 83.9 for heathy children (95% CI -15.6 to -7.6; p< .001). There were modest, mostly negative and at times significant correlations between age and HRQoL domain scores (Table 1). Statistically significant differences in Physical health, Total score (PedsQL 4.0), Daily Activities and Worry (PedsQL 3.0) were driven by lower scores of children with Polyarticular JIA. These differences appeared independent of age and gender.

Table 1: Child PedsQL 4.0 Generic and PedsQL 3.0 Arthritis Module Domain Scores

Conclusion:

As per previous studies, PedsQL scores in JIA patients were significantly lower than healthy norms. These differences may be accentuated in older children and polyarticular subtypes. Disease activity factors will be assessed at the completion of cohort data collection. We will use PedsQL data to train public school nurses about the impact of JIA on HRQoL. QoL interventions may depend on age groups, and may constitute an additional parameter in the management of children with rheumatic diseases.

ACR Meeting Abstracts - https://acrabstracts.org/abstract/quality-of-life-assessment-in-juvenile-idiopathic-arthritis-a-single-center-assessment/