Publications (2)10.95 Total impact
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ABSTRACT: The Childhood Health Assessment Questionnaire (CHAQ) is a commonly used measure of disability and physical function for children with juvenile rheumatoid arthritis (JRA), whose scores range between 0 (no disability) and 3 (very severe disability), with a smallest potential difference in the CHAQ score of individuals at 0.125. We estimated minimal clinically important differences (MCID) of the CHAQ for worsening and improvement that were actually experienced by children with JRA using patient, parent, and clinical perspectives. Changes in CHAQ scores were calculated for parent (n = 92) and patient ratings (children age > or = 8 yrs only; n = 67) between subsequent clinic visits. Changes in patient well being and disease activity and the occurrence of flare or important improvement between visits served as external standards for the MCID. MCID were defined as the median changes of the CHAQ scores of individual patients who had a minimal important improvement or worsening between visits. The median change in CHAQ scores of patients who rated themselves or were rated by others as unchanged was often 0. Depending on the external standard used, the MCID for improvement of the CHAQ was -0.188 at most, while the MCID for worsening was at most +0.125. The MCID of the CHAQ for both improvement and worsening are often at or close to the level of the smallest potential difference, suggesting that the CHAQ is relatively insensitive to important short term changes in children with JRA. This may warrant a change in the calculation of the global CHAQ score, or the development of more sensitive functional measures.
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ABSTRACT: To examine the strength of the association between different measures of health-related quality of life (HRQOL), disability, pain, and well-being in children with chronic arthritis. To evaluate whether HRQOL scores vary as a function of disability status beyond chance. To assess the quality of the parent proxy report for HRQOL as compared with disability, pain, and well-being. Measures of HRQOL (visual analog scale [VAS] of health, Pediatric Quality of Life Inventory [PedsQL], Juvenile Arthritis Quality of Life Questionnaire (JAQQ), and modified standard gamble technique [SG]), disability (Childhood Health Assessment Questionnaire), VAS of pain, and VAS of well-being (VAS-well) were completed by the parents (n = 119) and patients > or =8 years (SG: > or =12 years). HRQOL was highest when measured by the SG, whose utilities were no more than weakly correlated with any of the other outcomes. The values of all other HRQOL measures were at least moderately correlated with each other and with the VAS-well. Irrespective of the measure used, disability was associated with significantly decreased HRQOL. There was fair to good agreement and moderate consistency of the HRQOL ratings (SG: fair consistency) between patients and parents with marked differences between health domains. HRQOL measured by the PedsQL, JAQQ, and VAS are moderately to highly correlated with each other in children with chronic arthritis. The children's HRQOL significantly decreases with increasing disability. Despite more pronounced differences for some health domains, parents are moderate to good proxy reporters of HRQOL, disability, and well-being of children with chronic arthritis.