We are currently seeking participants who live in Australia and are the parent or carer of a child who has Eosinophilic Oesophagitis (EoE) and is between the ages of 1 month and 18 years.
As EoE is a rare but emerging disease recruiting participants who are not members of online support groups can be challenging. Your assistance in passing on this information to any potential participants would be greatly appreciated.
Why is the research being conducted?
Currently, there is no cure for Eosinophilic Oesophagitis (EoE) and treatment involves strict food elimination diets, steroid medication and special nutritional formulas. EoE patients often feel socially isolated due to their food restrictions.
This research aims to identify what types of medicines and therapies are being used for the treatment of paediatric EoE, to gain further understanding as to why they are being used and who is recommending them; and to obtain insight into parents’ perspectives of the physical and
emotional impact of paediatric EoEon patients and their families. The results will highlight areas in which additional support may be needed to improve the management of paediatric EoE and support EoE families.
What will participants have to do?
They will be asked to complete an online survey (approximately 25 mins duration). Questions will explore quality of life and experiences in the healthcare system for paediatric EoE. Survey participants will be given an option to go into the draw to win one of five $50 gift vouchers.
Who is behind this project?
The researchers involved in this project “Exploring healthcare use, burden of disease and satisfaction with care in paediatric eosinophilic oesophagitis” are from Griffith University. Ethics approval has been obtained from the Griffith University Human Research Ethics Committee (GU Ref No: 2018/120).
For further information
Please contact Nicole Hannan on [email protected]
