A new research programme called PrimaryBreathe will launch this September, with a mission to develop and evaluate breathlessness support that could be made available to everyone who needs it across the UK.
Breathlessness affects the daily lives of one in ten adults, and a quarter of those aged over 70. Many people with long-term health conditions suffer from breathlessness, particularly those with chronic lung or heart disease. And the numbers are growing worldwide, because long-term conditions are becoming more prevalent in our ageing populations. COVID-19 is adding to the problem, as breathlessness can continue long after initial infection.
Being short of breath is debilitating and distressing and often leads to crisis calls for help. Breathlessness contributes to one in five emergency department attendances by ambulance. However, doctors and nurses often feel they cannot help, as breathlessness continues even when they have treated the underlying health condition.
But a small number of specialist teams have developed very effective ways to support patients to improve their own breathing, without taking additional drugs. These teams, like the Cambridge Breathlessness Intervention Service, are usually part of palliative care services. Many have limited capacity and tend to help people with severe disease, often cancer, nearing the end of life.
This type of care now needs to be adapted for use in primary care, so that it can be accessed by many more people living with breathlessness
Over the next five years, the research team will develop and test an intervention to help people suffering from chronic breathlessness. It will be underpinned by an educational tool developed by the Cambridge Breathlessness Intervention Service, called the Breathing Thinking Functioning model.
The new intervention will be developed with patients and primary care staff specifically for use in primary care.
The ultimate aim is that if the new intervention is found to be effective, that it will become available to anyone in the UK who has chronic breathlessness, whatever their underlying condition or disease stage, and wherever they live.
The research will be funded by the National Institute for Health and Care Research (NIHR) and jointly led by Dr Anna Spathis, Assistant Professor and Honorary Consultant in Palliative Medicine, and Jonathan Mant, Professor of Primary Care Research, both at the University of Cambridge’s Primary Care Unit.
The five-year research programme aims to give general practice staff the skills to help their breathless patients feel better, in control and out of hospital. Patients and staff are enthusiastic about this work and have already been giving us advice. For example, they want treatment to be available by telephone or video, so people do not have to leave their homes.”
– Dr Anna Spathis, joint chief investigator
The PrimaryBreathe research programme
Dr Spathis explains that the programme will have three parts:
“First, the treatment, PrimaryBreathe, will be created by patients, family carers, staff and researchers working together to create a primary care version of the existing specialist breathlessness treatment. After receiving training, primary care staff will support patients to learn techniques to self-manage their breathlessness.”
“The treatment development process will have several stages, to make sure PrimaryBreathe meets everyone’s needs and can be properly tested.”
“Second, we will involve forty general practices from five UK regions, and over 600 patients, to test the treatment. Half the practices will be randomly chosen to provide PrimaryBreathe over four weeks, and the rest will give standard care.”
“Patients and family carers will complete four online questionnaires over six months, measuring their symptoms and experience of caring.”
“Third, we’ll generate information to support successful roll-out across UK general practices of what we found to be helpful. Patients and other experts will advise us, and we will take particular care that people from any background can receive this support.”
Overall, this programme should enable a step-change in access to support for people suffering from chronic breathlessness.”
– Dr Anna Spathis
Asthma + Lung UK, the Primary Care Respiratory Society, British Thoracic Society and International Primary Care Respiratory Group are all backing this work and have agreed to share expertise and help spread the findings.
Opportunity to join the PrimaryBreathe team
Lucy Lloyd, communications, Primary Care Unit