Quality of life in young adults with cerebral palsy

Benran Jiang, Ph.D., Janet Walstab, B.Sc., Susan M. Reid, Ph.D., M.Clin.Epi., B.App.Sc., Elise Davis, Ph.D., Dinah Reddihough, M.D., B.Sc., F.R.A.C.P., F.A.F.R.M.

Disability and Health Journal, Volume 9, Issue 4
Published online: May 02, 2016

Background

Little is known about the quality of life (QOL) of young adults with cerebral palsy.

Objective/hypothesis

This cross-sectional analysis compares the QOL of a cohort of young Australian adults with CP with a cohort of able-bodied peers to explore the relationship between QOL and impairments, functioning, and social participation.

Methods

Young adults identified from the Victorian Cerebral Palsy Register were invited to complete a survey about QOL, gross motor function, independence in self-care, and social participation. QOL was assessed with the Quality of Life Instrument for Young Adults (YAQOL). A general population sample of young North American adults, who had completed the YAQOL was selected for comparison.

Results

Surveys and consent forms were completed by 335 young adults or their proxies, an overall participation rate of 63% of those located. The mean age of the study participants was 24.7 [s.d = 2.8] years; 51% were male and 49% female. Two hundred and seven (62%) of the 335 participants self-reported their QOL. When compared with the general population sample, self-reporting participants had similar QOL scores for the social relationship and environmental context domains (p > 0.05), while QOL scores were lower for the physical health, psychological well-being, and role function domains (p < 0.001). There was no association between psychological well-being and variables related to body structure and gross motor function in young adults with CP.

Conclusions

Contrary to the assumption that young adults with severe CP have low psychosocial well-being, it is apparent that these individuals can have good psychosocial well-being regardless of their disability.