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Illustration of ideas for breathlessness research

Transforming the recognition and management of breathlessness

Breathlessness is the feeling of being out of breath as your lungs work harder to draw in more oxygen. Persistent breathlessness is when this continues long-term, despite treatment of the underlying condition. It is a frightening symptom that leads to distress for patients, families and carers and affects over two million people in the United Kingdom and 75 million people across the world.

The Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation at King’s runs a programme of research which aims to tackle breathlessness across a range of advanced diseases. The findings from this work has led to a transformation of how breathlessness is recognised and treated in both the UK and abroad.

Broadening the research base

Before 2010, most of the evidence and experience in management of and services for breathlessness came from patients with advanced cancer. There was limited understanding of breathlessness at the end of life for people with other chronic conditions such as Chronic Obstructive Pulmonary Disease (COPD) and heart diseases. Researchers at the Cicely Saunders Institute revealed that breathlessness was common across many diseases, with high symptom burden, as people with chronic conditions experience symptoms for long periods.

Effective, drug-free support for patients and families

Researchers at the Institute brought together all the evidence about the most effective treatments known about breathlessness. They discovered that non-pharmacological interventions such as walking aids could be effective in improving mobility, self-care and reducing breathlessness in advanced diseases. These findings led to the development of a short-term holistic breathlessness support service in London to help patients manage their breathlessness at home.

The Breathlessness Support Service is a multi-professional intervention which is helping patients and their carers live better with breathlessness.

The service provides outpatient clinic visits to the Cicely Saunders Institute and a home assessment over a six-week period. Patients are seen by respiratory and palliative care physicians and their carer has access to a social worker. There are follow up visits to a patient’s home by an occupational therapist and a physiotherapist.

Also, as part of this service, patients are given a support pack to use at home and which is tailored to their needs. The pack contains information cards on various activities which can help ease breathlessness, such as breathing exercises, positions, sleeping habits, muscle strengthening and distraction techniques which can all help ease breathlessness. It also includes a handheld fan, as a cool draft of air can help reduce the feeling of breathlessness.

Our members are increasingly aware of the growing body of research evidence relating to breathlessness, particularly from King’s College London and University of Cambridge. The published research has been summarised in our research directory which is frequently accessed by members on our website. The impact and importance of the research can then be seen in the high demand for training from our members, to support them as they implement the new, evidenced based approaches in the services they provide for people living with breathlessness.– Emily Stowe, Chair of the Association of Chartered Physiotherapists in Oncology and Palliative Care (ACPOPC)

Analysis of the support service found that patients were less distressed and depressed due to breathlessness. In interviews, people said they felt more in control and more confident in managing their breathlessness, were less isolated, and able to get back to their daily activities. Both patients and their carers, including family, said they appreciated the tailored education that helped them understand their breathlessness better. They particularly valued the simple management tips and the expert staff who took a dignified approach to their care.

With my illness, breathlessness is the main and most problematic symptom for me. My mother also had suffered from breathlessness – she had terminal cancer. And my 90-year-old uncle now currently suffers from it – he has asbestos on the lungs. It is such a debilitating symptom and has a huge impact on quality of life. Anything to reduce the impact of this symptom would have been a great help to me and my family.– Margaret Ogden, a Cicely Saunders Institute patient representative who suffers from breathlessness

Inspiring health services beyond the UK

The support service has improved the quality of care, dignity and lives of patients, their families and those that support them. Its success has led to this approach being adopted and influencing the development of a variety of similar services elsewhere in the UK and in other countries. Examples include the Early Integrated Palliative Home Care (PHC) for end-stage Chronic Obstructive Pulmonary Disease (COPD) patients in Belgium, The Munich Breathlessness Service (MBS) in Germany and the Breathlessness Management Service at St Christopher’s Hospice in London.

The work continues

For researchers at the Cicely Saunders Institute, work continues to significantly improve the treatment of severe breathlessness. This includes a large-scale project - BETTER-B - which aims to establish whether Mirtazapine, currently used as an antidepressant, is an effective treatment to reduce severe breathlessness even when people are not depressed. This research is taking place across five European countries and will bring cohesion to how breathlessness is managed by respiratory and palliative care specialists.