The 2023 round of the PROBE Australia Study has now commenced.
Click here to complete the web survey - select AUSTRALIA
You can also download the myPROBE app version from
- Apple Store (iOS)
- Google Play (Android)
Or ask HFA
to send you a print copy.
Please complete the survey by 31 January 2024.
Read more about the 2023 PROBE Australia Study
The PROBE (Patient Reported Outcomes Burdens and Experiences) Study
How can HFA and haemophilia organisations around the world have access to good quality data about the health and treatment experiences of people with bleeding disorders?
The multi-national PROBE (Patient Reported Outcomes Burdens and Experiences) Study aims to do precisely that.
Haemophilia Foundation Australia has joined the PROBE investigation team to be part of this important international study on the impact of living with a bleeding disorder.
WHAT IS THE PROBE STUDY?
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, 2 and 3) have been testing and implementing the research methodology in haemophilia. They allow people with haemophilia to report their haemophilia severity, treatment history and the impact of haemophilia on their daily life.
This data is being 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 enables 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.
For more information about PROBE international, visit the PROBE study website.
Date last reviewed: 4 December 2023
The 2023 round of the PROBE Australia Study has now commenced!
The PROBE Australia Study is the Australian contribution to the multinational PROBE (Patient Reported Outcomes Burdens and Experiences) Study
You may have done the PROBE survey in 2019. This is a new round of the survey.
The 2023 round will compare results now to 2019, which was before new treatments were widely available in Australia.
Click here to complete the PROBE questionnaire - select AUSTRALIA
Please complete the survey by 31 January 2024.
HOW CAN YOU BE INVOLVED?
You are invited to complete the questionnaire if you are an adult (18 years+) who lives in Australia
- have haemophilia or carry the gene
- do NOT have a bleeding disorder.
Consider passing the survey on to your partner/wife/husband or other members of your family or interested friends or colleagues. The answers of people without a bleeding disorder are also important - they will be compared to people with haemophilia. We need several hundred Australian participants for good quality results.
HOW TO DO THE SURVEY
The questionnaire is available in different formats:
Q. What if I don't have time to do the survey all at once?
A. The web and app survey automatically saves your responses as you go. You can come back later and keep going from where you left off.
Q. Can multiple people use the same device to complete the survey?
A. Yes. When one person has completed the survey and submitted, the next person can start. You may need to logout of the survey to start again on some devices.
Q. Can I do the survey if I don't have a bleeding disorder?
A. Yes. Your survey response will be very important as a comparison to people with haemophilia. We need several hundred people without a bleeding disorder to complete PROBE as well as people with haemophilia, so consider encouraging other people you know to do the survey.
Q. My doctor just gave me a PROBE questionnaire to complete. Is this the same survey?
A. It is the same questions but not the same study. PROBE is a well-respected and validated questionnaire so Australian HTCs are also using it for some of their research studies. If you want to participate in both the HTC research study and the HFA PROBE Australia Study, you will need to complete both questionnaires.
WHAT HAPPENS TO YOUR DATA?
All responses are anonymous and confidential. They are combined for statistical data and will not identify individuals. The survey is voluntary – completely up to you - and no one will know if you have completed the questionnaire or not.
Statistics from Australians survey responses are provided to HFA by the international PROBE team to use in our advocacy and planning for the future.
WHY IS THE PROBE AUSTRALIA STUDY IMPORTANT?
What is the impact of haemophilia on Australians? What has changed since new treatments became available? How can we provide high quality evidence about this?
With more new treatments becoming available, HFA’s advocacy will rely on strong and credible data - like the data from PROBE.
We also need good evidence to understand the different experiences of living with haemophilia – for example, women, people with mild haemophilia or inhibitors, getting older with haemophilia. PROBE data is helping to point out important issues in all of these areas.
You may have seen the 2019 PROBE data in the HFA Getting Older report
. Detailed findings from PROBE can be found in Appendix 2
Find out more about the international PROBE Study
For more information about the PROBE Australia Study
, contact Suzanne at HFA:
T: 1800 807 173
Date last reviewed: 4 December 2023
About the PROBE study
Haemophilia Foundation Australia is participating in the PROBE (Patient Reported Outcomes Burdens and Experiences) Study.
The PROBE study is a multi-national, patient-focused research study.
The PROBE study allows people with haemophilia to report their haemophilia severity, treatment history and the impact of haemophilia on their daily life. This data is used to analyse the perspectives of people with haemophilia on outcomes that affect their own life and care. The research supports efforts to improve treatment and comprehensive care programs in Australia and other countries around the world. All data is kept confidential.
More details about the PROBE international study, including publications, are available on the PROBE study website.
Phase 1 (2014-2015) was the very first stage of developing the questionnaire:
- Test understanding of questionnaire content and clarity (haemophilia impact only at this stage)
- Assess methodology and in-country implementation feasibility
- Establish core analytics
A small number of Australian community members with haemophilia or parents of children with haemophilia were invited to test the draft questionnaire and give feedback on the questions and instructions.
Read more about Phase 1 here.
Phase 2 (2016) was the next stage to assess the questionnaire's feasibility through a pilot study:
- Validate proof of concept
- Pilot web platform
- Assess reproducibility
- Establish analytic controls/population comparators
More than 100 Australian community members with haemophilia or who carry the gene and people who do not have a bleeding disorder tested the online and print questionnaire.
Read more about Phase 2 here.
PHASE 3/REAL WORLD
Phase 3/Real World (2019 onwards) is the next stage to extend the study and is now underway in Australia:
- Real world roll-out - inviting the wider haemophilia community to participate in the study
- Maintaining the capacity to continue collecting the data
- Modifying the study infrastructure to allow for longitudinal collection of PROBE data (repeating the study on the same individuals and linking their data over a number of years)
- Complementing and enhancing the utility of national registries or WFH Global Survey data
- Measuring impact of country development initiatives.
Read more about Phase 3/Real World here.
Who is Probe?
PROBE is a multi-national patient-focused investigator driven research project. It is led by a global team of patient and academic investigators with diverse professional credentials:
INTERNATIONAL INVESTIGATION TEAM:
Mark Skinner, JD, Institute for Policy Advancement Ltd [former WFH President] (US)
Chatree Chai-Adisaksopha MD, Division of Hematology, Department of Internal Medicine Chiang Mai University (Thailand)
Randall Curtis MBA, Factor VIII Computing (USA)
Neil Frick MS, National Hemophilia Foundation (USA)
Alfonso Iorio MD PhD FRCPC, McMaster University, Dept of Clinical Epidemiology and Biostatistics (Canada)
Michael Nichol PhD, University of Southern California, School of Policy and Planning Development (USA)
Declan Noone, European Haemophilia Consortium (Belgium)
Brian O’Mahony, Irish Haemophilia Society (Ireland)
David Page, Canadian Hemophilia Society (Canada)
Jeff Stonebraker PhD, North Carolina State University, Poole College of Management (US)
AUSTRALIAN INVESTIGATION TEAM:
Haemophilia Foundation Australia
Suzanne O’Callaghan, Policy Research and Education Manager - Leading research study implementation in Australia
Monash University, Melbourne
Dr Liz Bishop, Michael Kirby Centre for Public Health and Human Rights - Overseeing ethical process; answering any ethics concerns or queries
Mark Skinner and Alfonso Iorio's PROBE Team at McMaster University in Canada are leading the international PROBE investigation with the Australian team.
The PROBE study is voluntary and anonymous and surveys are treated confidentially. In Australia, people participating must return their print surveys in reply paid envelopes to HFA to ensure they are not identifiable. They are then uploaded securely for the international PROBE team data manager to analyze. Alternatively, if they complete their survey online, their survey results will go directly into to the secure PROBE survey database, auspiced by McMaster University, Canada. Only the PROBE teams at HFA and McMaster University will see the original print surveys and all original print surveys will be kept in locked and password protected secure storage at HFA and McMaster University. All survey data will be kept confidential and no data will be reported that could identify individuals.
The PROBE study has Human Research Ethics Approval from Monash University (MUHREC Project Number: CF15/4363 - 2015001518).
If you have any questions about the ethical process of this study, please contact:
Dr Liz Bishop. Monash University - email@example.com
If you have any concerns or complaints about the conduct of the project, please contact the Executive Officer, Monash University Human Research Ethics (MUHREC): firstname.lastname@example.org
For more information about the PROBE international study, visit the PROBE study website - www.probestudy.org.
Or contact Suzanne O'Callaghan at HFA:
Date last reviewed: 31 August 2023
T: 03 9885 780
HFA participated in Phase 1 of the PROBE study.
Some of you were involved in distributing and completing the surveys for Phase 1. Thank you for your support! We needed 35-50 completed surveys by the end of 2015 to have enough data to be analysed, and by Christmas had received 39 surveys, which was an amazing effort in a very short few weeks!
WHAT DID PHASE 1 INVOLVE?
- Seeking ethics approval via Monash University, Melbourne
- Testing how clear the questions are
- Testing the methodology and the statistics that could be gained from the results.
Our thanks 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.
Phase 1 tested a print survey on haemophilia only. Some Australian community members with haemophilia and carers or parents of children with haemophilia completed the draft questionnaire and gave feedback on the questions and instructions. The completed surveys and question feedback sheets were then scanned and transferred electronically to the PROBE research team at McMaster University for analysis.
HFA received a report on the Australian results in January 2016 and was invited to participate in an international meeting where the worldwide results were discussed:
- More than 700 surveys were completed by 15 countries
- Results demonstrated validity and that the research methodology was robust
- Phase 1 data is useful for understanding how to use the potential results but cannot be used for representation on health issues at this point – we need to wait for phase 3
- Australian feedback on questions was put in a spreadsheet and each comment was addressed by the research team leaders
- As a result of global feedback, new questions will be added in Phase 2 for women who carry the gene
- Some other small changes were made to the Australian version of the survey
- For good comparable data, in future Australia needs to recruit more people with moderate haemophilia to complete the survey.
A poster about Phase 1 was presented at the European Association for Haemophilia and Allied Disorders (EAHAD) Congress in Sweden in February 2016 and very well received.
An article on Phase 1 was also published in the journal Pilot and Feasibility Studies in 2018. Visit the PROBE study website to read more.
If you have any questions about the PROBE survey, please contact Suzanne at HFA on 1800 807 173 or email@example.com
MORE ABOUT THE PROBE STUDY
Date last reviewed: 9 November 2018
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.
More about the PROBE Study
Date last reviewed: 14 March 2019
In Phase 3 of the PROBE study (real-world), the wider haemophilia community is invited to participate in the survey.
The aim is to collect information about the impact of haemophilia and current treatments from the perspective of Australian adults with haemophilia or who carry the gene. This is also compared to experiences of other adults in this community who do not have a bleeding disorder.
This is known as the ‘real-world’ study. This time community members’ questionnaire responses are analysed and used as data about real-life experiences rather than testing whether the questionnaire works.
WHY BE INVOLVED IN the REAL WORLD STUDY?
For Australians this is an important and exciting opportunity to create our own database of high-quality patient data about individuals’ experience of haemophilia, treatment and quality of life. We need data like this to understand current issues for our community; and also to represent these issues to governments or treatment and service funding bodies in a credible way. Without this data HFA has not had enough strong evidence to use in our advocacy for new treatments.
Findings from the 2019 round of the PROBE (Australia) Study are now being used as evidence in HFA strategic work, for example the HFA Getting Older report.
In 2023 we have now commenced a new round of data collection to compare with these results.
WHO CAN PARTICIPATE?
In the Phase 3/Real World PROBE Australia Study
All adults (18 years or over) who live in Australia were invited to participate if they
- have haemophilia or carry the gene
- do NOT have a bleeding disorder (eg, partner/wife/husband, extended family, caregiver, friend of someone with a bleeding disorder).
HOW TO PARTICIPATE?
Participants were invited to complete an anonymous and confidential questionnaire online, in a web app or in print.
PHASE 3 EXTENSION STUDY
In Phase 3 the international investigators are studying the capacity of the system to continue to collect country data for large numbers of participants worldwide over time.
Another aspect of Phase 3 is to investigate modifying the infrastructure of the database system and data collection process to allow for longitudinal collection of PROBE data. This is so that individuals can complete the questionnaire at regular intervals, eg every 2 years, and to link their responses each time they do the survey to see if anything has changed for them. Some countries including Canada have been testing this during Phase 3. HFA is looking into the feasibility of doing the same in the future in Australia.
For more information about the PROBE Australia Study,
please contact Suzanne O'Callaghan at HFA:
T: 1800 807 173
To find out more about PROBE international
, visit the PROBE study website – www.probestudy.org
More about the PROBE study
Date last reviewed: 4 December 2023