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

Aim

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.

Conclusion

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.