PrimaryBreathe: programme to develop and test a brief remote primary care intervention for chronic breathlessness

Breathlessness affects the daily lives of one in ten adults, and a quarter of those aged over 70. The number of people experiencing breathlessness is growing worldwide, with increasing long-term health conditions like heart or lung disease. COVID-19 is adding to the problem, as breathlessness can continue long after initial infection. Being short of breath is disabling and frightening. Breathless people frequently contact their doctors surgery or call an ambulance. However, doctors and nurses often feel they cannot help, as breathlessness continues despite treating the underlying health condition. A small number of specialist teams have developed effective ways to support patients to improve their own breathing, without taking additional drugs. However, these teams are usually part of palliative care services and they tend to help people with severe disease, often cancer, nearing the end of life. This type of care now needs to be adapted so that it can be accessed by many more people, with any disease at any stage, and through their regular healthcare teams. This five-year research programme aims to achieve this by giving 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 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. 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 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 will 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. This will be the first time anyone has tried to make breathlessness support available to every person who needs it. National and international organisations are backing this work, and have agreed to help spread the findings to relieve the suffering of the increasing numbers of people living with this distressing symptom.