The BREATHE project is a collaboration between IMPACCT and a number of other organisations, including the Lung Foundation Australia. Our aim is to co-design and test an optimal Breathlessness Action Plan and supporting resources.
Background
Many people with chronic obstructive pulmonary disease (COPD) experience ‘persistent’ breathlessness that interferes with everyday activities like shopping, housework and having a shower.
For some people, breathlessness can become worse in a way that’s frightening, resulting in them calling an ambulance or going to Emergency.
Worsening breathlessness can sometimes be a symptom of a COPD ‘exacerbation’ or ‘flareup’ that requires medical treatment. However, at other times, it can be caused by exertion or changes in the weather, and can be self-managed using simple strategies such as positioning, breathing techniques, and a hand-held fan. People often need to manage feelings of panic in these situations to avoid a ‘vicious cycle’ between anxiety and breathlessness.
‘Breathlessness Action Plans’ are easy-to-follow guides that summarise what to do when breathlessness becomes worse using simple, non-medicated strategies to help breathing and thinking.
Breathlessness action plans can be used as the first step of a ‘COPD Action Plan’ that covers medical treatments such as antibiotics or emergency care to manage a COPD exacerbation.
Project aims
This 3-year project is partnering with people living with COPD, support persons, and healthcare professionals (i.e. doctors, nurses, allied health) to co-design and test an optimal Breathlessness Action Plan and supporting resources.
The project has potential not only to improve quality of life for people with COPD and their families but also to reduce unhelpful Emergency presentations.
Research plan
Phase 1 (completed): Scoping Review and Survey of Current Practice
From October to December 2023, we conducted a survey of people living with COPD, support persons, and healthcare teams to find out what action plans were already being used in Australia, New Zealand, and internationally. We also searched for existing Breathlessness Action Plans on the internet and in the research literature.
Phase 2 (completed): Co-Design Workshops – Round 1
We ran our first round of 7 co-design workshops from May to September 2024. Findings from the survey were given to teams of people with COPD, support persons, and healthcare professionals. They used this as a basis for deciding the content to include in an optimal Breathlessness Action Plan. This round of co-design workshops is now complete.
Phase 3 (completed): Co-Design Workshops – Round 2
We have run a second round of co-design workshops with a new team of people with COPD and support persons to decide the design of the plan, including the format, style and diagrams, that will make it easy to use.
Phase 4 (Current): Public Consultation of the Draft Breathlessness Action Plan
We are seeking feedback on the draft Breathlessness Action Plan from people with COPD, support persons and healthcare professionals to make it even better. We expect this phase to run from November to December 2024.
You can read more about how to give feedback by visiting the Designing and testing an optimal breathlessness action plan webpage.
Phase 5: Feasibility Testing in Hospital Settings
After we receive feedback on the draft plan, we will trial a revised version at three hospitals.
We will interview people who use the plan and their healthcare teams to collect their ideas on how it can be further improved and can be better supported. We expect this phase to run from March 2025 to August 2026.
Phase 6: Co-Design Workshops – Round 3
We will create a digital format of the plan (i.e. website and/or mobile app). The content, design and usability of this version will be decided by a new team of people with COPD, support persons, and healthcare professionals. We expect this phase to run throughout the second half of 2026.
Phase 7: Final Breathlessness Action Plan
The final plan will be made freely available in print and digital formats through the Lung Foundation Australia’s website, networks, and educational programs, as a complement to their COPD Action Plan.
Give feedback on a draft Breathlessness Action Plan
We are currently looking for people to provide feedback on a draft Breathlessness Action Plan. We are hoping to receive feedback from:
• People with COPD
• People who provide support to a person with COPD
• Health Professionals working with people with COPD
To find out what's involved and how you can help, please go to the ‘Providing feedback on a draft Breathlessness Action Plan’.
More information
0493 867 101
Research team
Project team
Dr Tim Luckett (University of Technology Sydney)
Mary Roberts (Western Sydney Local Health District)
Don Dennett (person living with COPD and breathlessness)
John Hancock (person living with COPD and breathlessness)
Lennette Ruttle (support person)
Marina Siemionow (support person)
Kate Smith (Lung Foundation Australia representative)
Associate Professor Jo River (University of Technology Sydney)
Muneeba Chaudhry (University of Technology Sydney)
Investigator team
Dr Tim Luckett (University of Technology Sydney)
Mary Roberts (Western Sydney Local Health District)
Associate Professor Jo River (University of Technology Sydney)
Professor Marie Williams (University of South Australia)
Anna Keedwell (The Maitland Hospital)
Dr Gerben Keijzers (Gold Coast University Hospital)
Dr Tracy Smith (Western Sydney Local Health District)
Associate Professor Joel Rhee (University of New South Wales)
Professor Meera Agar (University of Technology Sydney)
Ester Klimkeit (New South Wales Health)
Lennette Ruttle
Don Dennet
Dr Ann Hutchinson (University of Hull)
Professor David Currow (University of Wollongong)
Dr Mark Pearson (University of Hull)
Professor Miriam Johnson (Hull York Medical School)
Dr Slavica Kochovska (University of Wollongong)
Dr Eila Erfani (University of New South Wales)
Dr Flavia Swan (University of Hull)
Associate Professor Kylie Johnston (University of South Australia)
Dr Michael Crooks (University of Hull)
Partner organisation
Funding
Medical Research Future Fund Consumer-Led Research grant, APP 2023248