A multicentre, randomised controlled trial comparing usual NHS care to a self-guided internet-based intervention (SELF-BREATHE) plus usual NHS care to reduce breathlessness in adults living with chronic breathlessness
Adults living with chronic breathlessness due to malignant and non-malignant diseases
Intervention arm: SELF-BREATHE SELF-BREATHE is a complex, theoretically informed intervention developed with patients following the IDEAS and MRC frameworks. Participants allocated to the intervention group (SELF-BREATHE) will continue to receive their usual NHS care and they will also be given a username and password, which provides unlimited access to SELF-BREATHE. SELF-BREATHE has seven core components, delivered via multi-model media i.e., animations, written text, audio files, pictures, and instructional videos. 1. Patient education about chronic breathlessness and self-management. 2. Self-monitoring of breathlessness; breathlessness severity, distress due to breathlessness, and the impact of breathlessness on life, with real-time algorithm-based automated feedback. 3. Breathing exercises and techniques to improve breathlessness self-management e.g., breathing control exercises, pursed-lipped breathing, and body positions to relieve breathlessness. 4. Breathlessness self-management planning: patients can formulate a personalised breathlessness crisis plan, which will include the breathlessness management techniques used at points of breathlessness crisis e.g., breathing control. 5. Improving physical activity: advice on how to increase daily activity levels, self-directed and self-monitored home exercise programme of bed, chair and standing-based exercises. 6. Personalised Goal Setting: self-guided support for patients to set personalised goals and track achievement and success. 7. Ask the expert: inbuilt messaging service where patients can ask a question or get advice about any specific aspect of SELF-BREATHE (minimal response time of 48 hours).
1. Adults ≥ 18 years of age 2. Chronic Breathlessness at rest and/or exertion 3. Chronic Breathlessness (CB) defined as breathlessness that persists (> 3 months) despite pharmacological treatment of the underlying disease including, but not limited to; cancer, chronic obstructive pulmonary disease (COPD), interstitial lung disease (ILD), bronchiectasis, chronic fibrotic lung disease following SARS-CoV2 infection 4. Medical Research Council (MRC) dyspnea score ≥ 2 (MRC 2= short of breath when hurrying on the level or walking up a slight hill 5. Access to a computer, tablet, or smartphone with internet access 6. Able to provide informed consent
1. Breathlessness of unknown cause 2. Primary diagnosis of chronic hyperventilation syndrome 3. Currently participating in a rehabilitation programme e.g., pulmonary/cardiac rehabilitation (patients that have completed PR > 4 weeks will be eligible).