Agreement between Saudi children with cerebral palsy and their parents on the perception of hrqol using the pedsqlâ?¢ 3.0 parent proxy-reports and self-reports: A pilot study.

Abstract

Background: Child involvement in health care decision-making is essential during health planning. Additionally, parents’ perceptions of their children’s Health-Related Quality of Life (HRQOL) could influence healthcare utilization in regards to children with Cerebral Palsy (CP) and their families. Objectives: Our goal was to assess the level of agreement between children with CP and their parent’s perception of HRQOL by using the PedsQL™ 3.0 instrument in Arabic. Materials and Methods: a cross-sectional study involving a convenient sample of 29 children with CP (mean age of 10.3 ± 1.5 years old) and their parents/caregivers filled the electronic version of the PedsQL™ 3.0 Cerebral Palsy Module in Arabic. The data was analysed via Pearson’s Correlation Co-efficient (PCC) and Intraclass Correlations Coefficient (ICC). Results: We found a strong to moderate positive correlation between child self-reports and parent proxy-reports in the Daily Activity (r=0.58, p<0.001); Movement and Balance (r=0.61, p<0.001); and Eating Activities (r=0.58 p<0.001). A moderately positive correlation was found in the Speech and Communication scale (r=0.48, p<0.001) of PedsQL™ 3.0. There was no significant correlation in the School Activity, Fatigue, and Pain and Hurt scales. The parents/caregivers significantly underestimated their children’s QOL in the School Activity, Pain and Hurt, and Movement and Balance scales. Conclusion: An acceptable level of agreement was found in certain PedsQL™ 3.0 scales. However, we found a tendency for parents/caregivers to underestimate their child’s QOL. Future studies should include a larger sample size and validate the Arabic translation of the PedsQL™ 3.0.