PROBE study update


Suzanne O'Callaghan is HFA Policy Research and Education Manager

Between September 2016 and February 2017 HFA took part in the second phase of the multi-national PROBE (Patient Reported Outcomes Burdens and Experiences) Study to test the PROBE survey in Australia.

The PROBE study aims to give HFA and haemophilia organisations around the world access to good quality data about the treatment and health experiences of people with bleeding disorders. It is very important to validate the research methodology by testing it to make sure the study is recognised internationally as strong data and that it works for Australians.


PROBE is a patient-focused research project led by a global team of patient and academic investigators, including Mark Skinner, former WFH President, and Assoc Prof Alfonso Iorio from McMaster University, Canada, who have worked closely with HFA on the Australian arm of the study. The research will support efforts to improve treatment and comprehensive care programs in Australia and other countries around the world.

In the future the PROBE study will cover the range of bleeding disorders. The initial stages of the survey (Phases 1 and 2) tested the research methodology in haemophilia and allowed people with haemophilia to report their haemophilia severity, treatment history and the impact of haemophilia on their daily life.

This data will be used to analyse the perspectives of people with haemophilia on outcomes that affect their own life and care. It is particularly important data to have when HFA tries to understand what the issues are for our community, and will enable us to quantify and represent these issues in a robust and credible way to our Council and others, such as governments or treatment and service funding bodies.


Phase 2 of the PROBE study aimed to test:

  • Whether the survey questions will capture consistent responses if they are repeated twice in the same Australian community
  • The stability of the online survey.

Australia joined a number of other countries in the Phase 2 reproducibility test, including Brazil, Canada, Mexico, Poland and Vietnam.

In Australia, there were two survey rounds in Phase 2 to compare results:

Round 1: 20 September – 12 December 2016

Round 2: 16 December 2016 – 22 February 2017 

Survey participants were welcome to complete both rounds. Participants lived in Australia, were adults (18 years or over) and had haemophilia or carried the gene; or were the partner, family member or caregiver of someone with a bleeding disorder, but did not have a bleeding disorder themselves. These two groups were also compared with each other.


HFA worked with Monash University in Melbourne to obtain ethics approval for Phase 2, including the data handling processes.

We are grateful to Dr Liz Bishop from the Michael Kirby Centre for Public Health and Human Rights at Monash University for her support of the ethics process and her advice.


Australian survey participants for phase 2:

People with haemophilia/carry the gene – 51 (required = 50)
People without a bleeding disorder – 52 (required = 50)

TOTAL – 103 (required = 100)

Results of the international study are currently being collated and analysed.


Phase 3 is the final stage of implementing the study around the world and is due to commence in 2018. When this begins in Australia, we will be inviting all adult community members with haemophilia or who carry the gene, or are the partner, family member or caregiver of someone with a bleeding disorder, but do not have a bleeding disorder themselves to complete the survey.

When all the survey results for phase 3 have been entered and then analysed by the McMaster University and international PROBE team, HFA will be given access to the de-identified Australian and international data through a secure dashboard where we can compare answers to specific questions in the survey, for example, how many people with haemophilia in a particular age group have pain management problems as compared to other ages. This will be invaluable data for our work to improve treatment and care.


For more information, please contact Suzanne O'Callaghan at HFA:

T: 1800 807 173

Or visit the PROBE study section on the HFA website.

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