Building Breathlessness Research

Breathlessness is the feeling of being out of breath as your lungs work harder to draw in more oxygen. It is common in many different health conditions, especially chronic respiratory diseases, such as chronic obstructive pulmonary disease (COPD) and interstitial lung disease (ILD), heart diseases, some cancers, some neurological diseases and many other conditions. First line treatments relieve breathlessness by addressing the underlying cause of the disease. However, when the best treatment for the underlying cause of the illness are used, and yet breathlessness continues to get worse, this is often called chronic or refractory breathlessness.

Severe breathlessness is debilitating and frightening. If you want to know what it feels like, try breathing through a straw. Breathlessness stops people from doing things that are important to them, such as hobbies or being with friends. It affects the ability to talk, to go out, or to do things at home. It can cause anxiety and panic for those affected and those important to them. It often gets worse as the illness progresses, so people are more likely to be admitted to hospital for emergency care and other emergency healthcare services. This causes additional stress and worry. Living with and/or caring for someone with breathlessness can cause significant burden and financial costs to the whole family.

Breathlessness is very common, affecting around 15 million people in Europe in any one year, with numbers set to rise. However, research has shown it is neglected, often under-treated, and invisible to healthcare services.

Researchers at the Cicely Saunders Institute and their international collaborators have worked to improve the visibility of breathlessness. They have done this by first learning more about the effects of breathlessness on patients and those close to them, and then growing an evidence-base for treatments.

The first research explored the experience of breathlessness and found that for people with lung diseases, symptoms were under-treated, leading to breathlessness symptoms becoming worse. The research also studied the effect on caregivers, such as family members, and found that severe breathlessness reduced the rewards of caregiving.

The research also found that much more than the lungs are important in breathlessness. Stronger muscles, especially of the legs, are is very important. This is because stronger muscles need less oxygen than weaker muscles to do the same work. Therefore, strengthening the muscles can help breathlessness even though the lung is not changed. Simple changes, like providing walking aids, can also be useful. How the brain receptors respond to the signals of breathlessness may also be important. In this, sometimes, even simple things like airflow across the nose and face, can help to relieve breathlessness. Therefore, breathlessness is best relieved with a combination of therapies. It is sensible to start first to try the non-drug treatments, with other medicines becoming necessary if breathlessness becomes more severe and protracted.

Building on this early research the Cicely Saunders Institute brought together all the evidence about the most effective treatments known about breathlessness into a short-term integrated service called the Breathlessness Support Service (BSS). The service was tested in a randomised controlled trial (the accepted ‘gold standard’ in research). The BSS gave patients and those important to them, such as a family member, a comprehensive assessment and treatment plan from a team of professionals including palliative care, respiratory, rehabilitation and occupational therapy specialists. The team then devised a bespoke plan for treatment, including non-drug treatments such walking aids, muscle strengthening, breathing training, information about breathlessness, physiotherapy, a crisis management plan, as well as pharmacological treatments where necessary. Everyone left the first clinic visit with a ‘Breathlessness Toolkit’, to support self-management strategies, including positions to get in when breathless, what breathlessness is, a mantra to use to help manage a crisis, a hand-held fan and water spray bottle (both to cool the face). The trial found that quality of life as affected by breathlessness improved significantly when using the service. Moreover, those who got the service also had longer survival than those who did not, with no additional cost to healthcare services.

In Cambridge, a similar service called the Breathlessness Intervention Service (BIS) also found a significant reduction in breathless-related distress in patients, as well as lowering overall healthcare costs.
As one patient with cancer noted:

‘giving you tips on how to do things (physiotherapist and occupational therapist home visit), you know sort of little things like when you’re using the vacuum cleaner, to breathe out when you push it out. Little things like that, you don’t think of. Um, there were quite a few things and they’re logged in the memory bank, but I remember them as I do them it’s become automatic now.’ (Gysels et al, Eur Respir J. 2015 Nov;46(5):1515-8).

An international consortium of breathlessness experts from palliative care and rehabilitation are joining in 2019 for a European Commission funded trial to see whether an antidepressant, mirtazapine can help in managing breathlessness when non-drug treatments no longer help enough. Small studies suggest that mirtazapine may help in breathlessness, even when people are not depressed. The trial will test whether mirtazapine is an effective and cost-effective in relieving breathlessness, and will also help to understand more about whether, when and how it might work.