Higher Self-Than Parent-Reported Health-Related Quality of Life in Adolescents With Cerebral Palsy; a Register Study.

Objective: To investigate health-related quality of life (HRQoL) in adolescents with cerebral palsy (CP), compare self-reporting with parental proxy-reporting and identify factors associated with low HRQoL.

Methods: Adolescents aged 15-17 years with normal to mildly impaired cognitive function enrolled in the Norwegian Quality and Surveillance Registry for CP were eligible. Adolescents with both self- and parental proxy-report on HRQoL (Paediatric Quality of Life; PedsQL) were included. Self- and proxy-reported physical and psychosocial domain HRQoL scores were analysed for associations by sex, mobility, pain and mental health (Strengths and Difficulties Questionnaire; SDQ).

Results: Seventy-two adolescent-parent HRQoL dyads were retrieved. Self-reported HRQoL was higher than parental proxy-reported HRQoL in all domains. Females reported lower HRQoL. A higher level of mobility was associated with higher physical, but not with higher psychosocial functioning in both self- and proxy-reports. Pain was associated with decreased proxy-reported psychosocial functioning. Increased SDQ total difficulties scores were associated with decreased self- and proxy-reported psychosocial functioning and proxy-reported physical functioning.

Conclusions: Adolescents with CP reported a higher HRQoL than their parents proxy-reported. The severity of motor impairment was not associated with psychosocial well-being. Mental health issues decreased both self- and parental proxy-reported HRQoL. Pain decreased parental proxy-reported HRQoL.