Objective: To evaluate changes in health-related quality of life (HRQoL) in patients with refractory juvenile idiopathic arthritis (JIA) who are being treated with etanercept.
Methods: 53 patients with JIA from seven Dutch centres were included. HRQoL was measured by the Childhood Health Assessment Questionnaire (CHAQ), Child Health Questionnaire (CHQ) and Health Utilities Index mark 3 (HUI3) at the 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. A statistical method linear mixed models was used to assess outcomes over time.
Results: During etanercept treatment both disease-specific and generic HRQoL outcomes improved dramatically. Significant improvements were shown after 3 months and these improvements continued at least up to 27 months of treatment. The disease-specific CHAQ, including VAS pain and wellbeing, showed a significant improvement in all domains. The generic health-profile measure CHQ improved for all the health concepts except for “family cohesion”, which was normal. The generic preference-based HUI3 showed impairment and, subsequently, significant improvement in the more specific domains (“pain”, “ambulatory”, “dexterity”). In accordance disease activity variables also improved significantly over time.
Conclusion: This study shows that the HRQoL of patients with refractory JIA can be substantially improved by the use of etanercept for all aspects impaired by JIA. Information on HRQoL is crucial to understand the complete impact of etanercept treatment on patients with JIA and their families.
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▸ Additional data are published online only at http://ard.bmj.com/content/vol69/issue1
Funding Board of Health Insurances and Wyeth International.
Competing interests Wyeth International has financially supported the development and maintenance of the web-based ABC register since 2007.
Neither the Board of Health Insurances nor Wyeth International had any role in the design and conduct of the interpretation of the data; or preparation, review, or approval of the manuscript. Researchers are independent of the sponsors.
Ethics approval Approval from the medical ethical committee of Erasmus MC, Rotterdam and the local medical ethical committee was given in every participating centre.
Provenance and Peer review Not commissioned; externally peer reviewed.