The BREATHE project is a collaboration between IMPACCT and the Lung Foundation Australia. Our aim is to co-design and test an optimal breathlessness action plan and supporting resources.
The BREATHE Project
Background
Many people with chronic obstructive pulmonary disease (COPD) experience ‘persistent’ breathlessness that interferes with everyday activities like shopping, housework and having a shower. Sometimes breathlessness can become suddenly worse in a way that’s frightening, resulting in some people calling an ambulance or going to Emergency.
Sudden 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 may be self-managed using simple strategies such as breathing techniques, positioning, and a hand-held fan.
Breathlessness ‘action plans’ are easy-to-follow, step-by-step guides that tell a person and their families or other support persons what to do when breathlessness becomes suddenly worse.
Project aims
This 3-year project will partner with people living with COPD, support persons, and healthcare teams (e.g. doctors, nurses, allied health) to co-design and test an optimal breathlessness action plan and supporting resources.
Research plan
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. This survey has now closed.
Currently, we are running our first round of co-design workshops where findings from the survey will be provided to teams of people with COPD, support persons, and healthcare teams who will use them as a basis for designing an optimal breathlessness action plan.
Once designed, we will be seeking feedback on the draft action plan later in the year from people with COPD, support persons and healthcare professional.
After we receive feedback on the draft plan, we will then trial the breathlessness action plan at three hospitals, observing how and when the plan is being used. We will interview people who use the plan and healthcare teams to collect their ideas on how it might be further improved.
The final plan will be made freely available in online, print, and mobile ‘app’ formats through the Lung Foundation Australia’s website, networks, and educational program, as a complement to their COPD action plan.
The project has the potential not only to improve quality of life for people with COPD and their families but also to reduce unhelpful Emergency presentations.
Expressions of interest
We are currently seeking expressions of interest for the next round of co-design workshops. We are also seeking people to provide feedback later this year on the draft breathlessness action plan.
To find out what's involved and how you can help, please go to the Designing and testing an optimal breathless action plan page.
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)
Amanda Curran (Lung Foundation Australia representative)
Associate Professor Jo River (University of Technology Sydney)
Muneeba Chaudhry (University of Technology Sydney)
Investigation 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 [opens external site] (University of South Australia)
Anna Keedwell (The Maitland Hospital)
Dr Gerben Keijzers [opens external site] (Gold Coast University Hospital)
Dr Tracey Smith (Western Sydney Local Health District)
Associate Professor Joel Rhee [opens external site] (University of New South Wales)
Professor Meera Agar (University of Technology Sydney)
Ester Klimkeit (New South Wales Health)
Lenette Ruttle
Dr Ann Hutchinson [opens external site] (University of Hull)
Professor David Currow [opens external site] (University of Wollongong)
Dr Mark Pearson (University of Hull)
Professor Miriam Johnson [opens external site] (Hull York Medical School)
Dr Slavica Kochovska [opens external site] (University of Wollongong)
Dr Eila Erfani [opens external site] (University of New South Wales)
Dr Flavia Swan [opens external site] (University of Hull)
Associate Professor Kylie Johnston [opens external site] (University of South Australia)
Dr Michael Crooks [opens external site] (University of Hull)
Partner organisation
Funding
Medical Research Future Fund Consumer-Led Research grant, APP 2023248
