Objective: To evaluate changes in Health-Related Quality of Life (HRQoL) in patients with refractory Juvenile Idiopathic Arthritis (JIA) while treated with etanercept.
Methods: We included 53 JIA patients from seven Dutch centres. HRQoL was measured by the Childhood Health Assessment Questionnaire (CHAQ), Child Health Questionnaire (CHQ) and Health Utilities Index mark 3 (HUI3) at start and after 3, 15 and 27 months of treatment. At the same time points the following JIA disease activity variables were collected; physician’s global assessment through the Visual Analogue Scale (VAS), number of active and limited joints and erythrocyte sedimentation rate. Statistical method Linear Mixed Models was used to assess outcomes over time.
Results: During etanercept therapy HRQoL improved dramatically on both disease specific and generic HRQoL outcomes. Significant improvements were shown after three months and these improvements continued at least up to 27 months of treatment.
The disease specific CHAQ, including VAS pain and well-being, showed a significant improvement on all domains. The generic health-profile measure CHQ improved on all the health concepts except for "family cohesion", which was normal. The generic preference-based HUI3 showed impairment and subsequently significant improvement on the more specific domains ("pain", "ambulatory", "dexterity").
In accordance also disease activity variables improved significantly over time.
Conclusion: This study shows that HRQoL of patients with refractory JIA can substantially be improved by the use of etanercept on all aspects impaired by JIA. Information on HRQoL is crucial to understand the complete impact of etanercept treatment on JIA patients and their families.