Abstract
BackgroundJuvenile Idiopathic Arthritis (JIA) affects children and adolescents with both short-term and long-term disability. These children also report lower health-related quality of life (HRQOL) compared to their healthy peers. However, there seems to be some discrepancies between self- and parent-reports, and gender differences need to be further studied. This study aims to describe HRQOL in girls and boys with JIA, and to explore gender differences in self-reports compared to parent-reports of HRQOL in children with JIA.MethodsFifty-three children and adolescents with JIA (70% girls and 30% boys) with a median age of 14 years (8–18 years), and their parents, participated in this cross-sectional study in Sweden. Data was systematically collected prior to ordinary visits at a Pediatric outpatient clinic, during a period of 16 months (2009–2010). Disability was assessed with the Childhood Health Assessment Questionnaire (CHAQ), and disease activity by physicians’ assessments and Erythrocyte Sedimentation Rate (ESR). The Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL) was used to assess self- and parent-reports of HRQOL in the child.ResultsIn this sample of children with generally low disease activity and mild to moderate disability, more than half of the children experienced suboptimal HRQOL, equally in girls and boys. Significant differences between self- and parent-reports of child HRQOL were most evident among girls, with lower parent-reports regarding the girl’s physical- and psychosocial health as well as in the total HRQOL score. Except for the social functioning subscale, where parents’ reports were higher compared to their sons, there were no significant differences between boys- and parent-reports.ConclusionsMore than half of the girls and boys experienced suboptimal HRQOL in this sample, with no gender differences. However, there were differences between self- and parent-reports of child HRQOL, with most significant differences found among the girls. Thus, differences between self- and parent-reports of child HRQOL must be taken into account in clinical settings, especially among girls with JIA.
Highlights
Juvenile Idiopathic Arthritis (JIA) affects children and adolescents with both short-term and long-term disability
Procedure Families who gave consent to participate in the study completed several questionnaires as parts of a larger study, of which the current study report health-related quality of life (HRQOL) results based on the PedsQL questionnaire
In ten of the girls, at least one additional diagnosis was reported by the child or the parent, i.e. uveitis, overweight, asthma, dermatitis, Turners syndrome, celiac disease, Crohn’s disease, and attention-deficit/hyperactivity disorder
Summary
Juvenile Idiopathic Arthritis (JIA) affects children and adolescents with both short-term and long-term disability. These children report lower health-related quality of life (HRQOL) compared to their healthy peers. This study aims to describe HRQOL in girls and boys with JIA, and to explore gender differences in self-reports compared to parent-reports of HRQOL in children with JIA. It has been established that children with JIA report lower health-related quality of life (HRQOL) as compared to their healthy peers [3,4,5,6,7,8,9]. Disability and pain have been found to be the most important determinants of physical and psychosocial well-being, in a European and Latin American study of HRQOL in JIA patients [9]
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