Capital Health Network

Many people with lung and heart conditions live with breathlessness every day. Even when they receive good medical care, managing this distressing symptom stops people doing simple day-to-day activities. Many people with chronic breathlessness and their family/carers experience anxiety, depression and social isolation. Chronic breathlessness is a frequent reason for Emergency Department visits and hospital admissions, resulting in high health care costs for services, out-of-pocket expenses and increased care and support needs provided by carers. 

Internationally, growing research evidence supports the use of symptom-based care to lessen the effects of breathlessness on the of quality of life and distress to families. There is compelling evidence that in the year after receiving brief symptom-based interventions through a Breathlessness Intervention Service (BIS), unplanned hospital admissions reduce by as much as 50-60%. Despite this, few services are available in Australia that focus on the management of this troubling symptom.    

CHN engaged University of Technology Sydney, Southside Physio and consumers and clinicians to co-design and develop a pilot of a Breathlessness Intervention Service in the ACT. The ACT Breathlessness Intervention Service (ABIS) is addressing the local primary and community care needs. This pilot is contributing towards growing evidence about how a BIS could work best for our local community. It is also highlighting to clinicians the role of non-pharmacological interventions, including engagement of Allied Health practitioners, in managing breathlessness to reduce distress and improve quality of life of patients and their carers.  

The ABIS Pilot program was delivered by the Southside Physio Mobile team. Requiring a medical referral, the client received an initial home visit by Physiotherapist, with 2 to 4 follow-ups at home or by phone. Interventions are non-pharmacological and address the ‘Breathing, Thinking and Functioning’ components of breathlessness. Interventions are aimed at both patient and/or their carer. 

Key outcomes

• Ethics approval was granted for collection of quantitative data of patient and carer outcome measures and qualitative data from patient, care and referring health professional interviews feeding into a rolling analysis to inform improvement strategies via a co-design process.
• ABIS opened referrals from general practice in March 2023 and referrals from other health professionals opened in March 2024. 124 eligible patients have been referred to ABIS with 85 patients receiving at least one home consultation. 70 patients have completed the ABIS program. Most patients require 4-5 visits to gain maximum benefit from the ABIS intervention.
• All patients completing ABIS achieved improvement on at least one outcome measure e.g. severity of breathlessness, performance of nominated activity of daily living.
• 21% of patients who have received at least one visit so far reported thinking about calling an ambulance on 33 occasions, but self-managed instead using ABIS techniques.
• 77% of carers, of those patients who completed the program, reported at least a one-point improvement from “not confident” to “somewhat” or “very confident” in managing symptoms of breathlessness from their first session in comparison to their last session.
• 14 patients and one carer agreed to interview appreciating the benefits of a flexible program that was person-centred and the home-based features of the service.
• One Breathlessness Webinar for health practitioners in the community and general practice settings.
• ‘Evaluation of a Co-Designed Breathlessness Intervention Service for the ACT’ delivered at Canberra Health Annual Research Meeting (CHARM).

Client story

A patient was referred to the ABIS program with a history of chronic obstructive pulmonary disease, severe osteoarthritis and hypertension. This patient loved his garden and produced almost all of his food himself. They have a few olive trees, and it always was a great love and passion for this patient to produce several products with them. Due to being anxious of feeling breathless, they reduced their activity level severely. This led to an increase in pain due to their osteoarthritis, which then further reduced their activity level. Through the program we increased their activity level using a slow introduction to some functional activities around and inside his house. Due to the education given, the patient was not scared or anxious to go into a state of being breathless and could manage it with breathing techniques. Slowly their osteoarthritis pain improved, and they managed a higher level of activity. Initially they highly considered knee replacements, but after completing the program their pain reduced enough to go without surgery. In our last session they managed to have a full olive production going. The patient was loving every moment of it and was so appreciative of what the program meant to them.