Does gastrostomy improve the lives of children with severe disability and their families?
Investigators: Emma Glasson, Helen Leonard, Jenny Bourke, Jenny Downs, Kingsley Wong, Peter Jacoby
Approximately 13,000 children in Australia live with moderate to severe intellectual disability. A common health problem is feeding difficulties. Gastrostomy feeding can be used to provide food, fluids and medications, and this is usually followed by weight gain. However, we know little about its safety, how it effects other aspects of health and wellbeing, and associated cost. In this study, we are finding out how often gastrostomy is used in these children in Western Australia and New South Wales and we are using both data linkage, clinical and family reported data to determine its safety, effectiveness and costs.
A gastrostomy is a tube that passes directly through the skin into the stomach and can provide food and fluids to the child who has feeding difficulties. Children with intellectual disability often have feeding difficulties which may cause chest infections and make it harder to take medicines for conditions such as epilepsy, and a gastrostomy may help management of these problems. In this study, we are 1) using linked data to investigate the epidemiology of gastrostomy and how often complications occur and 2) analyse whether having a gastrostomy reduces the number of hospital admissions for chest infections or poorly controlled epilepsy. This study will also explore in depth the effects of gastrostomy as a management for feeding difficulties. Using a cohort study design, we will recruit families who have a child with moderate to severe intellectual disability and track the health and wellbeing of both the child and mother.
- Andrew Wilson (Perth Children's Hospital)
- Julian Trollor (University of Sydney)
- David Forbes (Department of Health WA)
- Lakshmi Nagarajan (Perth Children's Hospital)
- Madhur Ravikumara (Perth Children's Hospital)
- Preeyaporn Srasuebkul (University of New South Wales)