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.
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.
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:
T: 1800 807 173
1. Chai-Adisaksopha C, Noone D, Curtis R, et al. PB189: Exploring regional variations in the cross-cultural, international implementation of the Patient Reported Outcomes Burdens and Experience (PROBE) study. Abstracts of the 64th Annual Meeting of the Scientific Standardization Committee of the International Society on Thrombosis and Haemostasis, July 18–21, 2018. In Research and Practice in Thrombosis and Haemostasis July 2018;2:1-368. doi:10.1002/rth2.12125.
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