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 2024 HFA 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.
In these times when 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.
In total 72 Australian participants completed the survey.
- 38 adults with haemophilia
- 34 parents/carers of children (under 18 yrs) with haemophilia.
They completed:
- a Discrete Choice Experiment (DCE) – questions about a series of hypothetical (imagined/not real) treatments with 7 possible features
- a Best-Worst Scaling (BWS) exercise – choosing the most and least important treatment outcomes.
Our thanks to everyone who had a go at participating in the survey. The results are very valuable and we are preparing to publish a more detailed article – watch this space!
FAQs
What if I have questions about my haemophilia or my treatment?
If reading the survey results raises questions for you about your health or your treatment, speak to your Haemophilia Treatment Centre or your doctor.