Self-reported quality of life in adolescents with cerebral palsy

Health Related Quality of Life (HRQOL) is an important outcome in the delivery of health care. Research on the HRQOL in young people with cerebral palsy (CP) has relied on proxy-reports from parents. The purpose of this study was to investigate the self-reported HRQOL of young people with CP. A survey was mailed to 229 adolescents with CP in South Australia, of which 118 responded (51.5%). Seventy-one participants 11 to 17 years of age, self-reported HRQOL on the Pediatric Quality of Life Inventory 4.0 (PedsQL). Thirty-eight youth were deemed by their parent/guardian as having insufficient cognitive ability to self-report HRQOL and nine respondents returned their surveys incomplete. The mean PedsQL Physical Function score was 57.3 (SD = 24.3), the mean Psychosocial Function score was 64.5 (SD = 15.9), and the Overall PedsQL score was 62.0 (SD = 16.7). Compared to norms for children without disabilities, 67% of participants had an Overall PedsQL score greater than 1 SD below the mean. PedsQL scores were related to gross motor function classification level (Spearman's rho = -0.54), number of health issues (rho = -0.51), and socioeconomic status (rho = 0.28), but not age, gender, quality of sleep, or whether parent assistance was needed to complete the PedsQL. The results have implications for policy and efforts to identify and address barriers to full and satisfying participation in mainstream schools and community activities.