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

Project Description

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 as long-term health conditions, like heart or lung disease, become more common. 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 the underlying disease has already been treated.

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 stay well, 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. The treatment, PrimaryBreathe, will first be developed by patients, family carers, health professionals and researchers working together to create a primary care version of the specialist breathlessness treatment. After receiving training, primary care staff will support their patients to learn techniques to self-manage their breathlessness. The development process will have several stages, to make sure PrimaryBreathe meets everyone’s needs and can be properly tested.

The second part will involve thirty-two general practices from five UK regions, and over 500 patients. Half the practices will be randomly chosen to provide PrimaryBreathe over four weeks, and the rest will provide standard care. Patients and family carers will complete four online questionnaires over six months, measuring their symptoms and experience of caring.

The final part will generate information to help successful roll-out of PrimaryBreathe across UK general practices, if it is found to be helpful. Patients and other experts will give advice, and a directory will be made of services that can treat breathless patients.

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.