Quality of life and determinants in young adults with cerebral palsy

Quality of life and determinants in young adults with cerebral palsy
B JIANGMBBS1.2, E DAVIS PHD 3, J WALSTAB BSC 4.2, A LANIGAN 4, S REID 4.2,
D REDDIHOUGH MD 1.2,4

1 Developmental Medicine, Royal Children’s Hospital, Melbourne, VIC;
2 Department of Paediatrics, University of Melbourne, Melbourne, VIC;
3 McCaughey centre, VicHealth Centre for the Promotion of Mental Health and Community Wellbeing, School of Population Health, University of Melbourne, Melbourne, VIC;
4 Developmental Disability Research, Murdoch Childrens Research Institute, Melbourne, VIC, Australia

Background/Objectives: Improvements in paediatric care have increased the survival of young adults with cerebral palsy (CP) yet little is known about their quality of life (QOL). The aims of this study were to examine the QOL of young adults with CP and its relationship with impairments, functioning, social participation, personal and environmental factors.
Design: Population-based study of young adults with CP based on the ICF model.
Participants and Setting: A cohort of 818 young adults with CP, aged 20-30 years and born in Victoria, was recruited from the Victorian Cerebral Palsy Register. Data from a population-based sample of 751 young adults in U.S. were used for comparison.
Materials/Methods: Participants were asked to complete a postal questionnaire by self-report, or proxy report by parents or careers for those with intellectual or severe physical impairments. The quality of life instrument for young adults (YAQOL) was used to measure QOL from domains of physical health, psychological well-being, social relationship, role function, and environmental context. Functional ability was assessed using the self-reported version of the gross motor function classification system (GMFCS) and the barthel index. Information was collected regarding social participation, personal factors, and environmental factors. Univariate and multivariate linear regression techniques were conducted to identify the determinants and best predictive models of self-reported QOL.
Results: A total of 335 young adults with CP participated; 207 (62%) were able to self-report and 128 (38%) were proxy reported. Their mean age was 24.7 ± 2.8 years; 51% were males, half were GMFCS level I or II, and one-third were independent in daily activities. Self-reporting participants had lower levels of QOL than their able-bodied peers in the domains of physical health, psychological well-being, and role function (P<0.0001), but were similar in social relationship and environmental context domains. Physical health (level I:73.73 ± 16.5, II:55.22 ±20.2, III:46.75 ± 23.3, IV: 60.67 ±17.0, and V:34.11 ±16.99, F=20.34, P<0.0001) and role function mean role function in level I: 66.78 ± 19.2, II: 48.00 ± 31.0, III: 60.99 ± 25.5, IV:32.87 ± 35.7, and V:25.46±32.13, F=12.39, P<0.0001) domain scores decreased by GMFCS level, but not the psychological well-being or social relationship. Unemployment, dependent living, lower educational level, and poorer financial status were determinants of lower role function and poorer social relationship. Psychological well-being was not associated with any impairments, gross motor function, social participation, age, gender, or physical environment.
Conclusions/Significance: Self-reported QOL in young adults with CP was generally comparable to their able-bodied peers but it needs to be improved. More research is required to understand the determinants of psychological well-being in this population.

 
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