Abstract for presentation at 6th World Congress on Brain Injury

Health Related Quality of Life Early after Diagnosis in Children with Brain Tumours: Comparison of Parent and Child Report

  • Dr Anthony Penn, Bristol Royal Hospital for Children and Frenchay Hospital, United Kingdom
  • Dr Stephen Lowis, Bristol Royal Hospital for Children, United Kingdom
  • Mr Robert Shortman, Frenchay Hospital, Bristol, United Kingdom
  • Ms Renee McCarter, Frenchay Hospital, Bristol, United Kingdom
  • Prof Mike Stevens, Bristol Royal Hospital for Children, United Kingdom
  • Dr Andrew Curran, Frenchay Hospital, Bristol, United Kingdom
  • Dr Peta Sharples, Bristol Royal Hospital for Children and Frenchay Hospital, United Kingdom

    • Introduction: Brain tumours are the second most common childhood malignancy. The ultimate aim of treatment for survivors is improved Health Related Quality of life (HRQL) as perceived by the child. We have previously shown significant differences between brain tumour and control children using the parent report form of the Pediatric Quality of Life Scale (PedsQL). However, it has been suggested that reporting of HRQL by parents may not accurately reflect the children’s perception of their experience.
    Aims: To measure HRQL in children with brain tumours 1 month after diagnosis using parent proxy and self report measures and to compare the results.
    Methods: Longitudinal prospective study of children with brain tumours compared with normal matched cntrols. HRQL was measured using the Pediatric Quality of Life Inventory (PedsQL) parent and self reports.
    Results: 16 tumour patients and 16 matched controls have been studied to date. The mean age was 11.7 years, range 6.0-16.6. Tumour patients showed significantly reduced overall HRQL as measured by both the parent report PedsQL Total Scale Score (p<0.001) and the self report PedsQL Total Scale Score (p=0.001). Parent report showed significant differences between tumour patients and controls with respect to all four PedsQL domains (physical (p<0.001), emotional (p=0.002), social (p=0.011) and school (p=0.02)). Child report showed significant differences between tumour patients and controls for the physical (p=0.001), social (p=0.004) and school (p=0.011) domains but not for the emotional domain (p=0.20). There were significant correlations between the PedsQL parent and self reports with regard to the Total Scale Score (r=0.829, p<0.001) and the physical (r=0.829, p<0.001) and social (r=0.786, p=0.001) domains. There was no significant correlation between parent and child reports for the emotional (r=0.325, p=0.237) or school (r=0.453, p= 0.259) domains.
    Conclusions: Children newly diagnosed with brain tumours have significantly reduced HRQL as measured by both the parent and self report forms of the PedsQL. Our data indicates that the parent and self rated versions of the PedsQL yield similar results with the important exception of the emotional domain.

    Conference Organiser - ICMS Pty Ltd