HaemPref (Haemophilia Treatment Preferences) Survey
Do you have haemophilia? Or are you the parent of a child with haemophilia?
What would you like haemophilia treatment to achieve for you or your child? What would result in a better quality of life?
What types of treatment would you prefer – or see as acceptable?
In these times where new and innovative haemophilia treatments are in the pipeline, it’s important for HFA to know your preferences. This helps us to represent and support you.
HFA has commissioned Community and Patient Preference Research (CaPPRe) to conduct the HaemPref (Haemophilia Treatment Preferences) Survey on our behalf to understand what you value from treatment.
The survey involves:
- an anonymous online questionnaire (taking approx 30 mins)
- giving your opinion of different treatment options
- answering questions about your treatment experience
- other optional questions about you, such as the state/territory you live in.
You will be reimbursed for your time.
FAQs
Who can do this survey?
- Australian residents only
- Adults (18 yrs +) with haemophilia
- Parents of children (under 18 yrs) with haemophilia
Do I have to do this survey?
No, this survey is voluntary and anonymous. No one will know if you have done it or not.
If you don’t want to continue once you have started, you can withdraw from the research by closing the survey window before you submit it. However, the data from questions you have already completed will be kept and may be used for analysis unless you ask CaPPRe to delete it. You can’t withdraw your data once analysis is completed and de-identified results are published. Contact details for CaPPRe are in the survey introduction.
Can I do the survey on my phone?
You can only do the survey on a device with a screen that is 10 inches or more, eg computer, laptop or tablet. This is because you will be looking at tables with images in them and it won’t work on a mobile phone.
Can I stop the survey and come back to it?
- Once you have submitted an answer and clicked to the next page, it’s not possible to return.
- It’s best to complete the survey in one sitting, but if you need to take a break, CaPPre will email you a personal link to your survey before you start it so that you can resume the survey from where you left off.
How will you protect my privacy?
The survey is anonymous and any results that are reported by CaPPRe will be combined and will not identify individuals. CaPPRe will treat any information you share as confidential and keeps all data in a secure encrypted environment. Your information will only be used for this research project. For more information on privacy protection, read the introduction page to the survey or the CaPPre Privacy Policy.
How will I be reimbursed for my time?
If you are eligible to do the survey and have completed it fully, CaPPRe will ask you for your contact details and post you a gift card by mail. Your contact details will be treated as confidential and won’t be used for any other purpose. See the survey introduction for more information.
What if I have questions about my haemophilia or my treatment?
If doing the survey raises questions for you about your health or your treatment, speak to your Haemophilia Treatment Centre or your doctor.