Investigators: Amy Epstein, Andrew Whitehouse, Helen Leonard, Jenny Downs, Nada Murphy, Peter Jacoby
Summary
Approximately 2% of children are born with intellectual disability. They and their families often experience poor health and wellbeing. We will develop a measure of quality of life for affected children and then we will investigate how different factors affect both child and family quality of life. Our new measure will provide capacity to determine what treatments could improve the lives of affected children and their families.
Project description
Approximately 2% of children are born with intellectual disability. They and their families often experience poor health and wellbeing yet our understanding as to which factors are associated with their best quality of life is disappointingly poor. This is further hampered by the difficulty in measuring quality of life in these children. Our previous research on the determinants of health and wellbeing in intellectual disability has highlighted the urgent need to assess child and family quality of life leading to the current proposal. This project has developed a robust measure of child quality of life and is now identifying modifiable determinants for both child and family quality of life. We have established databases in Western Australia and Victoria for Down syndrome, cerebral palsy (some with intellectual disability), Rett syndrome and autism spectrum disorder, disorders that represent the clinical spectrum of intellectual disability. From these, we are recruiting families who have a six to 18 year old affected child, aiming to collect data from approximately 900 families on a suite of potential determinants and assess relationships with child and family QOL. Our new measure is called the Quality of Life Inventory-Disability (QI-Disability) and will build capacity to determine individual care plans, service planning, and the effectiveness of new Government policies such as the National Disability Insurance Scheme. In a sample reflective of the diversity of intellectual disability, we will identify modifiable factors that are amenable to intervention and could improve the lives of affected children and their families.
External collaborators
- Katrina Williams (Royal Children's Hospital Melbourne)
- Dinah Reddihough (Royal Children's Hospital Melbourne)