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Health-related quality of life lags behind other outcomes in children with JIA
Among children with juvenile idiopathic arthritis, improvements in health-related quality of life scores were delayed compared with disease activity, pain and disability, a disparity that indicates the need for both preference-based and nonpreference-based surveys to assess patient well-being, according to findings published in Arthritis Care Research.
“Overall quality of life, defined as an individual's perception of their position in life, may show little impact of a disease or its treatment, but [health-related quality of life] is expected to be responsive to therapeutic interventions,” Kiem Oen, MD, of the University of Manitoba, in Winnipeg, Canada, and colleagues wrote. “Suboptimal [health-related quality of life] in children with juvenile idiopathic arthritis (JIA) has been reported up to 6 years after diagnosis, and recent studies suggest a dissociation between [health-related quality of life] and disease activity, pain and disability.”
To analyze the changes in health-related quality of life among children with JIA, compared with other outcomes, and to identify predictors of decreasing quality of life, the researchers followed 1,249 patients who enrolled in the Research in Arthritis in Canadian Children Emphasizing Outcomes study for a median of 34.2 months.
The patients completed the Juvenile Arthritis Quality of Life Questionnaire (JAQQ), the health-related Quality of My Life (HRQoML) questionnaire and JIA core variables. The analysis included median values, Kaplan-Meier survival curves and latent trajectory analysis.
According to the researchers, initial negative effects on health-related quality of life, and the likelihood of achieving the best quality of life scores varied, with the best scores reported among patients with oligoarthritis, and worst among patients with rheumatoid factor–positive polyarthritis. The median times required to achieve the best possible score were 59.3 months for the JAQQ and 34.5 months for the HRQoML, and both lagged behind scores for disease activity, pain and disability measures. Among the patients, 7.6% followed JAQQ trajectories with regular major decreases in health-related quality of life. Approximately 13.8% of patients followed HRQoML trajectories with similar decreases in well-being.
“Children with JIA, their families, and care providers should be aware that the impact of JIA on [health-related quality of life] shortly after diagnosis can be significant but is highly variable, depending on the JIA category,” Oen and colleagues wrote. “Practitioners and researchers should include both preference-based and nonpreference-based instruments to obtain a complete assessment of [health-related quality of life], since some specific difficulties reported in nonpreference-based measures may have little bearing on self-assessed patient well-being.” – by Jason Laday
Disclosure: The researchers report funding from the Canadian Institutes of Health Research and the Fast Foundation.