CHILD-PARENT RATE DISCREPANCIES AMONG CHILDREN WITH JUVENILE IDIOPATHIC ARTHRITIS DEPENDS ON THE TYPE OF HEALTH-RELATED QUALITY OF LIFE INSTRUMENT USED

Lundberg V.¹, Eurenius E.², Eriksson C.¹

¹Umeå University, Department of Clinical Sciences, Pediatrics, Umeå, Sweden, ²Umeå University, Department of Public Health and Clinical Medicine, Epidemiology and Global Health, Umeå, Sweden

Background: Growing up with Juvenile Idiopathic Arthritis (JIA) is often associated with numerous functional limitations and affect health-related quality of life (HRQOL). Children with JIA have reported difficulties in communicating their needs to health care professionals, and their parents' perception of child HRQOL influences health care utilization. Discrepancies between child and parent-report are well documented. There are mixed findings in earlier studies considering gender differences in girls and boys reports versus parent reports, and discrepancies in different HRQOL-instruments need to be further studied.

Purpose: The aim was to explore gender differences between child and parent-report of child HRQOL measured with three different instruments, and to compare Swedish child and parental reports with European reference data of children with JIA and other health conditions.

Methods: Fifty-three children with JIA, aged 8-18 years, and their parents completed three HRQOL-instruments; the generic Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL), the condition-specific DISABKIDS for JIA, and DISABKIDS generic instrument for chronic conditions (DCGM-37). Both DISABKIDS instruments were used for comparison with European reference data of child and parental reports.

Results: There were no gender differences in child self-reports in any of the three HRQOL-instruments used. However, discrepancies between child and parental reports of child HRQOL were evident in PedsQL and DCGM-37. In these instruments girls scored most sub-domains and the total HRQOL higher than their parents. In boys the child-parental discrepancies were the opposite in one sub-domain, where the boys reported lower scores than their parents. Conversely, in the DISABKIDS for JIA there were no discrepancies between child and parental reports. In comparison to reference data from European cohorts of children with JIA and children with chronic conditions, Swedish children with JIA experienced more physical limitation and problems with feelings of social exclusion and lack of empathy. Swedish parents reported their children’s independence, physical limitation, social inclusion and total HRQOL significantly lower than the European parents did.

Conclusion(s): The type of HRQOL instrument you choose to use and the differences between child and parent- reports of child HRQOL must be taken into consideration in clinical settings. Child-parent discrepancies were less using the disease-related HRQOL instrument DISABKIDS JIA, and might therefore be preferable when children are unable to self-report. Children and adolescents with JIA in Sweden might need targeted intervention regarding the physical limitation and lack of understanding.

Implications: Routine measurements of HRQOL in pediatric health care is important among children with JIA, since the disease can include fluctuating disease-activity, long-term treatment, medication side effects, social and physical limitations, and comorbidities. Promoting child self-reports is essential when considering the many factors that can affect child-parent differences in measures of HRQOL. HRQOL-reports can draw attention to the need of targeted health care interventions, for example regarding the physical limitations and understanding. Exercise is verified to be beneficial for JIA children and leads to improved muscle strength, range of motion and quality of life, without affecting disease activity. Therefore, preventing physical limitations and supporting exercise is essential in physiotherapy, also to improve the HRQOL.

Funding acknowledgements: Financial support by the Västerbotten County Council, the Faculty of Medicine, Umeå University, the Oskarfonden Foundation and the Majblomman Foundation.

Topic: Paediatrics

Ethics approval: Ethical approval was obtained from the regional ethical review board in Umeå, Sweden (Dnr 09-070M).

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