Skip survey header

Exploring healthcare use, burden of disease and satisfaction with care in paediatric eosinophilic oesophagitis (EoE)

INFORMATION SHEET

Exploring healthcare use, burden of disease and satisfaction with care in paediatric eosinophilic oesophagitis (EoE)

INFORMATION SHEET
 
Chief Investigators: Associate Professor Evelin Tiralongo
Director, Clinical Trial Unit (Griffith Health), Discipline Head, Complementary Medicines Education (School of Pharmacy and Pharmacology), Griffith University 
Contact Email: e.tiralongo@griffith.edu.au

Dr. Sara McMillan 
Lecturer, School of Pharmacy and Pharmacology, Griffith University 
Contact Email: s.mcmillan@griffith.edu.au

Dr. Amie Steel
Research Fellow, University of Technology Sydney
Associate Director Research, Endeavour College of Natural Health
Contact Email: Amie.Steel@endeavour.edu.au

Nicole Hannan
Master of Medical Research Candidate, School of Pharmacy and Pharmacology, Griffith University 
Contact Email: nicole.hannan2@griffithuni.edu.au

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 and may seek complementary medicines and therapies, such as acupuncture, herbal medicine and nutritional supplements, to help manage their symptoms. There have been limited studies to assess use with, and satisfaction of these medicines by EoE patients, particularly children. 

We are seeking your consent to take part in this study as you are a parent or carer of a child with EoE in Australia, and we would like to find out about the impact of paediatric EoE on your family and your treatment experiences, including the use of complementary medicines and therapies.

What you will be asked to do
As a parent or carer of an EoE child you will be asked to complete an online survey (approximately 25 mins duration). Questions will explore quality of life and experiences of using complementary medicines and therapies and conventional treatment for EoE. Survey participants will be given an option to go into the draw to win one of ten $50 gift vouchers.

Survey participants will be invited to participate in a telephone interview to further explore the healthcare journey and treatment experiences for their child with EoE. Interviews will take approximately 45 minutes, at a time convenient to you; participants will be given a $30 gift card.

The expected benefits of the research
Currently there is no known research into the use of complementary medicines and therapies in paediatric EoE. This research aims to identify what types of complementary 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 EoE. The results will highlight areas in which additional support may be needed to improve the management of paediatric EoE.

Risks to you
We do not anticipate any risks to you as a result of participating in this research. You are able to answer any questions that you choose to, however, four specific questions will need to be answered as they are linked to the core research question. If you do not wish to answer the compulsory questions none of your survey responses will be included in the final data. Because this study is asking questions about a personal matter (the health of your child with EoE and impact on your family), this could result in an emotional response. If you require further assistance or someone to talk to, there are a variety of support organisations available, e.g. AusEE Inc. (www.ausee.org), Lifeline (13 11 14) or speak to a health professional.

Survey responses will remain anonymous. If you agree to an interview being audio-recorded, information will be de-identified upon transcription to protect the privacy of you, your child, and practitioners. While AusEE Inc. has agreed to support the promotion of this project, information about study participants will not be disclosed to this organisation. Any personal details obtained in order to conduct the interviews or to post gift vouchers to survey prize draw winners (such as name and phone number) will only be accessible to the research team. All data will be stored securely on a protected file on Griffith University’s G drive. Information you provide for this study will be retained for a period of five years post-publication and then destroyed.

Your participation is voluntary
Your participation is voluntary and you are free to withdraw from this study at any time. As survey responses will be anonymous, this information will be unable to be withdrawn after survey submission. If you decide to participate in an interview and later change your mind, you will be able to withdraw from the study at this stage and your information will not be included.

Expressing consent 
Completion of the survey will be taken as consent. If you choose to participate in an interview, you will be asked to read a consent form and provide verbal consent prior the start of the interview. 

The ethical conduct of this research
This project has been ethically approved by Griffith University Human Research Ethics (GU Ref No: 2018/120). Griffith University conducts research in accordance with the National Statement on Ethical Conduct in Human Research (2007). If potential participants have any concerns or complaints about the ethical conduct of the research project they should contact the Manager, Research Ethics on 3735 4375 or research-ethics@griffith.edu.au.

Feedback to you
Please contact Nicole Hannan on nicole.hannan2@griffithuni.edu.au if you would like to be directly notified of the results of this research. Interview participants will be offered a copy of their individual transcript and a summary of the findings. 

Questions or further information
If you have questions or require further information please contact Nicole (nicole.hannan2@griffithuni.edu.au) or Sara (s.mcmillan@griffith.edu.au; 07 555 27266).

Thank you for your assistance
Nicole Hannan, Evelin Tiralongo, Sara McMillan, Amie Steel

Privacy Statement 
The conduct of this research may involve the collection, access and/or use of your identified personal information. The information collected is confidential and will not be disclosed to third parties without your consent, except to meet government, legal or other regulatory authority requirements. A de-identified copy of this data may be used for other research purposes. However, your anonymity will at all times be safeguarded. For further information consult the University’s Privacy Plan at http://www.griffith.edu.au/about-griffith/plans-publications/griffith-university-privacy-plan or telephone (07) 3735 4375.