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 Canada, Nigeria, Poland, United States 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.
Who could participate?
Survey participants were welcome to complete both rounds. Participants lived in Australia, and 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.
PARTICIPANTS
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)
21 countries participated.
Results
An important learning from this phase was that larger numbers of survey participants will be needed at a country level to provide meaningful data. Participants were grouped as controls and into haemophilia severity, eg mild/moderate/severe. When comparing the different groups of participants, the sample sizes were found to be too small for stable results at a country level, but could be demonstrated at a regional level – for Australia, this was the Western Pacific Region and include countries such as Japan, Vietnam, Australia and New Zealand.
The results validating the PROBE study at a regional level were presented at the International Society on Thrombosis & Haemophilia (ISTH) Scientific and Standardization Committee (SSC) meeting in 2018 and are available on the PROBE study website – www.probestudy.org. (1)
Feedback about the online survey and its stability has been used to fix bugs and make enhancements for the phase 3 version.
For more information, please contact Suzanne O'Callaghan at HFA:
E: socallaghan@haemophilia.org.au
T: 1800 807 173