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JIA patients’ self-, parent-reports differed on diminished HRQOL
More than half the children and adolescents with juvenile idiopathic arthritis reported suboptimal health-related quality of life, and their parents indicated even lower scores for their daughters, according to study results.
Researchers in Sweden conducted a cross-sectional study of 53 patients with juvenile idiopathic arthritis (JIA; median age, 14 years; 37 girls) and participating parents (37 mothers, 12 fathers, four fathers/mothers jointly). Data were collected at a pediatric outpatient clinic from 2009 to 2010. The Childhood Health Assessment Questionnaire measured disability. The Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL) measured health-related quality of life (HRQOL) by assessing self- and parent-reports of HRQOL in the child.
Disease activity was generally low for patients with JIA, with the following diagnoses identified: oligoarthritis (36%), polyarticular arthritis RF-positive (17%), enthesitis-related arthritis (15%), unspecified arthritis (13%), psoriatic arthritis (11%), polyarticular arthritis RF-negative (4%) and systemic arthritis (4%). Mild to moderate disability was reported.
Patients reported a physical health mean score of 68.31, a psychosocial health mean of 78.66 and a total HRQOL mean of 75.06. Parents’ mean score for children’s physical health was 66.01, psychosocial health was 73.83, with a PedsQL total mean score of 71.14.
Suboptimal HRQOL was reported by 55% of the patients and 59% of parents, with no gender differences found in children’s self-reports. There were significant differences between girls’ self-reports and parent-reports, with lower mean parent-reports compared with self-reports regarding physical (65.49 vs. 70.82; P=.028) and psychosocial health (72.06 vs. 79.40; P=.002), as well as mean total HRQOL score (69.81 vs. 76.44; P=.003). Parents reported higher social functioning ratings for boys compared with self-reports, with boys’ parents reporting significantly higher scores compared with girls’ parents within the subscale (P=.04).
“Significant differences between self- and parent-reports of child HRQOL were shown, primarily among the girls,” the researchers concluded. “Thus, differences between child-and parent-reports of HRQOL must be taken into account in clinical settings, especially among girls with JIA.”