Improving the lives of people living with chronic breathlessness due to advance disease via a self-guided, internet-based breathlessness supportive intervention SELF-BREATHE

Background Some health conditions make breathing difficult and uncomfortable. When this happens every day, it is called chronic breathlessness. Over 3 million people living with heart and lung disease have chronic breathlessness in the UK. In addition, people living with long COVID commonly have breathlessness and they struggle to manage it. Breathlessness is very difficult for patients themselves and their families, resulting in disability and feelings of fear, distress, and isolation. Due a to lack of supportive breathlessness services many patients frequently attend hospital Accident and Emergency (A&E) departments seeking help. Given the on-going challenges faced by the NHS such as long waiting times, staff shortages, increased demand for services because of the COVID-19 pandemic, there is an urgent need to develop new ways to support those living with chronic breathlessness. One potential solution is to offer support online as in the UK, 7 out of every 10 people with chronic breathlessness are internet users. With the help of patients and NIHR funding I developed an online breathlessness supportive website called SELF-BREATHE. SELF-BREATHE provides information and self-management tools such as breathing exercises, that patients can do at home themselves. I have tested SELF-BREATHE as part of its development and it is acceptable and valued by patients. But what is unknown is whether SELF-BREATHE improves patients' breathlessness and their life? This is the question my research seeks to answer. Aims 1. To test if using SELF-BREATHE for six-weeks improves patients' breathlessness, their quality of life and whether SELF-BREATHE should be offered within the NHS 2. To see if patients opt to continue to use SELF-BREATHE after six-weeks and what benefits this may have for patients. Methods I will carry out a randomised controlled trial. For this, 246 people living with chronic breathlessness will be recruited. Each person will be randomly chosen by a computer to get their usual care or usual care plus access to SELF-BREATHE. All study participants will complete questionnaires at the start of the study, thereafter at six weeks and six months. These questionnaires will ask patients about 1) their breathlessness and its effect on their life and 2) planned and unplanned hospital visits. At the end of the study, I will compare answers to these questionnaires between the two groups at six weeks and six months. This will tell if SELF-BREATHE improved patients' breathlessness and reduced their need for unplanned hospital visits e.g., A&E attendances due to breathlessness. Patient and public involvement (PPI) I have, and will continue to, actively work with PPI groups. This includes PPI groups within the Cicely Saunders Institute, Asthma and Lung UK, NIHR-Research Design Service- London and the Centre for Ethnic Health Research. PPI input to date includes development and early testing work of SELF-BREATHE and the writing of this application. PPI expertise has ensured the project is focused on what matters to them. PPI members will advise on study promotion, patient recruitment and develop trial resources (e.g., information sheets, recruitment posters). PPI members will be paid for their time. Dissemination Once the study ends, I will share the findings through journal articles for researchers and professionals, via patient facing websites and social media. I will hold a knowledge exchange event, bringing together patients, carers, health professionals and health service planners to reflect on the study results.