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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
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.
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? >
Topics:
Advocacy
Getting older
Research
Keywords:
ageing
care
needs assessment
quality of life
treatment
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Date last reviewed: 22 June 2020