What did we learn from PROBE?

< What did we learn?

We were able to access age-related data from the PROBE Australia Study in February 2020. 

PROBE is a multi-national validated community questionnaire to understand the impact of haemophilia and treatment on quality of life. It compares the experience of men and women with haemophilia or who carry the gene to men and women without a bleeding disorder.

We looked at the results for some key areas, particularly for men and women aged 45 years and over: 

  • Treatment regimen
  • Target joints
  • Physical functioning and pain
  • Hepatitis C and other health problems
  • Work

father son and grandson talking outdoors

This was an important way to show the impact of haemophilia. For example, the results demonstrated very clearly how much having haemophilia can increase the experience of pain and problems with mobility or activities of daily living. We were able to compare results in the same age brackets between:

  • moderate/severe and mild haemophilia
  • men and women
  • people with haemophilia and people without a bleeding disorder. 

The graphs below are an example – you can see the full results in the report.

physical functioning and pain in men with haemophilia 45 yrs plus

physical function and pain in men without a bleeding disorder 45 years plus

Our thanks to Dr Liz Bishop, from the Michael Kirby Centre for Public Health and Human Rights at Monash University, for her ongoing support with overseeing the ethical process for the PROBE Study.

What will help? >

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