Quality of life and participation in children with non-ambulatory cerebral palsy; evaluation of transition to adolescence

Objective: To investigate the relationship between transition to adolescence and musculoskeletal problems with quality of life and participation in children between aged 6-18 years with Gross Motor Function Classification System (GMFCS) level IV and V Cerebral Palsy (CP). Material and Methods: A cross-sectional study included 60 children and caregivers with GMFCS level IV and V CP. Sociodemographic characteristics and medical history of the patients were evaluated. The data for the study were obtained through Caregiver Priorities and Disabled Child Life Health Index (CPCHILD), Child and Adolescent Participation Scale (CASP), Child Sleep Habits Questionnaire (CSHQ) and Zarit Care Burden Scale (ZBI). Range of motion, spasticity and contractures were evaluated with physical examination. Scoliosis and migration percentage were evaluated with scoliosis and hip radiography. The relationship between adolescence, contractures, scoliosis, hip dislocation, GMFCS levels, comorbidities and pain in with quality of life, participation, sleep, and caregiver's burden were evaluated. Results: The mean age of the participants was 11.13±3.29 years. The quality of life and participation of the GMFCS V group were found to be statistically significantly lower than the GMFCS IV group (p<0.01). A statistically significant negative correlation was found between the number of contractures and total CPCHILD score (r=-0.508 p=0.0001) and CASP total score (r=-0.486 p=0.0001). A statistically significant negative correlation was found between scoliosis angle with the CPCHILD total score (r =-0.546 p=0.0001) and the CASP total score (r=-0.377 p=0.003). The mean CPCHILD and CASP total scores in children with pain were statistically significantly lower (p=0.001). Conclusions: The quality of life and participation levels in children with GMFCS level V were lower than those with GMFCS IV. As the number of contractures, scoliosis degree and hip migration index increased, the quality of life and participation of children with CP decreased. It was determined that the quality of life, participation, sleep problems and caregiver burden did not change significantly in adolescent children with CP compared to non-adolescents.