Thank you for showing your interest in this survey, which is part of an Aotearoa Australia Pancreatic Enzyme Replacement Research (ASPERT) group project. Please read this information carefully. Take time to consider and, if you wish, talk with relatives/whānau or friends, before deciding whether to participate. If you decide to participate we thank you. If you decide not to participate there will be no disadvantage to you and we thank you for considering our request.
What is the purpose of this survey?
The purpose of this survey is to find out about your experience with pancreatic enzyme replacement therapy (PERT). You may know the medication as CREON. We wish to find out how your treatment was started and monitored, and what effect PERT has had on your symptoms. Your responses will help us to conduct further research, with the goal of improving the care of people with advanced pancreatic cancer.
Who is funding the survey?
The Chalky Carr Trust is supporting this survey.
Who can participate in the survey?
We are seeking participants who have been diagnosed with pancreatic cancer.
If I participate, what will I be asked to do?
You will be asked to complete an anonymous online survey. It includes 30 questions, exploring your experience with PERT. It will take approximately 6-8 minutes to complete.
If you do decide to participate, we ask that you take this survey only once.
How will I find out the results of this survey?
The results of the survey will be published in a peer-reviewed journal, where you may find them upon conclusion of the study.
We will also publish a summary on our website.
Is there any risk of discomfort or harm from participation?
This survey is not expected to cause any harm or discomfort.
What data or information will be collected, and how will they be used?
- Demographics (eg. age, gender, ethnicity) and information relating to your experience with PERT will be collected.
- Data will be available to the people directly responsible for this project including the lead investigator and co-investigators. The anonymous data collected will be securely stored so only the lead investigator and co-investigators will be able to access it.
- Data from the survey will be kept for at least 10 years in secure storage. Any personal participant information held may be destroyed at the completion of the research. The data taken from the survey will, in most cases, be kept for much longer, or possibly indefinitely.
- No information that could personally identify you will be used in any reports on this project.
What about my privacy?
This survey is anonymous.
We plan to share the survey results in the public domain, for example at conferences and in peer-reviewed journal publication(s). We may also use them to inform future research. Access to the survey results will be limited to the study researchers and administrators.
If I agree to participate, can I withdraw later?
Yes you can.
If you decide to withdraw, it will not affect your access to healthcare nor the quality of your healthcare. You can change your mind at any time and stop completing the survey without consequences.
You can also stop answering the survey and restart at a later date if you need more time.
Any questions?
If you have any questions now or in the future, please feel free to contact: Dr Amanda Landers: aspert@otago.ac.nz
This study has been approved by the University of Otago Human Ethics Committee. If you have any concerns about the ethical conduct of the research you may contact the Committee through the Human Ethics Committee Administrator (phone +64 3 479 8256 or email humanethics@otago.ac.nz). Any issues you raise will be treated in confidence and investigated and you will be informed of the outcome.