Welcome

What is the survey about? The topic is on the financial impacts of neuroendocrine tumours (NETs) to patients.

Why is the research being conducted? The purpose of the study is to understand the financial outcomes in people with NETs. Families experiencing ongoing follow-up and symptom management of neuroendocrine cancer can face significant personal medical expenses and time off work. This research will enable researchers to improve awareness of NETs in the medical profession and the general public. We will be able to demonstrate the financial burden of patients with NETs and we will seek to understand and quantify this issue.

Who is running the project?  Medical oncologists from Brisbane (A/Prof David Wyld), Melbourne (A/Prof Michael Michael), and Sydney (A/Prof Nick Pavlakis), health economics researcher (A/Prof Louisa Gordon), Unicorn Foundation (Kate Wakelin, Dr John Leyden) and the Australian Gastro-Intestinal Trials Group (Jan Mumford).

Thank you for assisting us by answering this anonymous survey which will not identify you personally in any way. The questions will provide important information about the economic impact that NETs can have on patients and their families.

This survey will take about 15 minutes to complete. Please read each question carefully. There will be some questions that will ask you to remember things that happened in the last 3 months.

If you have any problems filling out any of the questions or would like to talk to someone about the questionnaire, please call Louisa Gordon on (07) 3845 3717 during business hours (Brisbane time) or 0402 853 936 after hours.  

• I understand that my involvement in this research will include a one-off survey with or without the assistance of my carer or spouse, as required;  
• I understand that if I have any questions relating to the research project, I can contact the research team: Louisa Gordon on ph (07) 3845 3717  
• I understand that there will be no direct benefit to me from my participation in this research;  
• I understand that my participation in this research is voluntary and will in no way influence any current or future dealings that I may have with any medical or health services;  
• I understand that the information I provide will be stored in a de-identifiable form. The databases created will be password-protected and the passwords will only be known to the investigators. The database will be stored on the QIMR-B computer network which is itself password-protected. Only the Principal Investigators and their directly supervised staff will have access to the data. Data will be destroyed within 7 years of the study finishing as per NHMRC protocols.  
• If I agree to releasing my Medicare and PBS data to the researchers (requested at the end of the survey), I understand my survey will no longer be anonymous since I will need to provide my contact details to the researchers. Releasing Medicare and PBS data is optional. You will be asked to fill out a consent form authorising the study access to your complete Medicare and Pharmaceutical Benefits Scheme (PBS) data as outlined on the back of the consent form. Medicare collects information on your doctor visits and the associated costs, while the PBS collects information on the prescription medications you have filled at pharmacies. The consent form is sent securely to the Department of Human Services who hold this information confidentially.  
• I understand that I am free to withdraw at any time, without comment or penalty. This means if you decide to not complete all the questions in the survey, you can exit by closing the page at any time. This will be taken as you withdrawing from the study and your information will not be used in the data analysis;
• If during the course of the survey I feel distressed or upset by my experiences I understand that support is available from the Cancer Council helpline by phoning 13 11 20 (this is the same number in all states) or by contacting my GP or treating oncologist.  
• Provision of feedback will be made available to me at the end of the study upon request;  
• I understand that I can contact the Regulatory Affairs Manager, HREC Secretariat at QIMR Berghofer Medical Institute Human Research Ethics Committee on (07) 3362 0117 (or HREC.Secretariat@qimrberghofer.edu.au) if I have any concerns about the ethical conduct of the project;