Paediatrics (RCH) - Theses

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    A profile of young adults aged 20-30 years with cerebral palsy in Victoria: health, function, pain, quality of life, social participation, and service utilisation
    Jiang, Benran ( 2009)
    INTRODUCTION AND BACKGROUND: Cerebral palsy (CP) is the most common physical disability in childhood with a prevalence of approximately 2-2.5 per 100 live births. Improvements in paediatric care have increased the survival of individuals with CP. Overall 90% are expected to grow into adulthood yet little is known about the outcomes of young adults with this condition. In order to provide holistic services for this population, an understanding of various aspects of their lives is required. AIMS: To examine the outcome of young adults with CP from the perspective of perceived health status, functional ability, pain, quality of life (QOL), social participation, and healthcare service utilizations, compared with their able-bodied peers. To explore the determinants that contribute to the variation of these outcomes in the context of impairments, activity, participation, and personal and environmental factors. METHODS: This is a population based cross sectional study of young adults with CP based on the WHO International Classification of Functioning, Disability and Health (ICF) model. A cohort of 335 young adults with cerebral palsy born in Victoria, aged 20 to 30 years, was recruited from the Victorian Cerebral Palsy Register. Data of typically developed peers selected from the Household, Income and Labour Dynamics in Australia Survey 2004 were used for comparison for the outcomes of perceived health, pain, and social participation. Data from a population-based sample of 751 young adults in U.S. were used for comparative analyses of QOL. Participants were asked to complete a multidimensional questionnaire by self report, or proxy report by parents or carers for those with intellectual or severe physical impairments. The questionnaire was comprised of the Quality of Life Instrument for Young Adults, the Short Form-36 Health Survey Questionnaire version 2, the Gross Motor Function Classification System, the Barthel Index, and a demographic section. RESULTS: A total of 335 young adults with CP participated; 207 (62%) were able to self report and 128 (38%) were proxy reported. Compared with their able-bodied peers, self reported physical health in this population was lower but mental health was similar. Gross motor function, independence in self care, and limb distribution together explained 60% of the variance in the physical health data. They experienced more pain, impaired function, and reduced social participation, but despite this, their contact with medical and allied health professionals was low. Pain was linked with limb distribution and had a negative impact on functional ability, employment participation and QOL. Impaired functional ability, intellectual disability, and communication impairments had major effects in reducing social participation. Self reported QOL was similar to their peers in social relationship and environmental context domains, but was lower in the domains of physical health, psychological well-being, and role function. The impact of CP on the individuals’ QOL was on physical and functional aspects, and sometimes on social relationships, but not on psychological well-being. CONCLUSION: This study has demonstrated that greater efforts are needed to improve the health, function, QOL, and social participation in individuals with CP, accompanied by more research to monitor the effectiveness of interventions for them.