Chronic breathlessness leads to a decline in a patient's activity levels, an increased dependence on others for help, as well as feelings of isolation. Chronic breathlessness often leaves patients and those close to them feeling worried and helpless.
People with chronic breathlessness can have sudden and unexpected increases in their breathlessness, called 'breathlessness attacks'. These attacks can be very frightening, for patients and those close to them, and many people seek help during an attack from emergency services.
Breathlessness support services for patients with chronic breathlessness have been shown to improve patients' self-management and reduce their distress. However, access to such services is limited.
In this study, ARC palliative and end of life care researchers, led by NIHR clinical lecturer and consultant physiotherapist in chronic respiratory disease, King’s College Hospital NHS Foundation Trust, Dr Charles Reilly, will seek to answer: is it feasible and acceptable to offer a breathlessness support online?
The study is based around SELF-BREATHE, a self-guided, internet-based intervention for patients with chronic breathlessness. The intervention has two components focusing on: acute and chronic breathlessness management, underpinned by interventions including breathing control, fan therapy, and relaxation techniques.
Patients experiencing chronic breathlessness will be able to accesses both these self-management components within two weeks, and then implement suggested interventions – for example, daily breathing control exercises, whole-body strengthening exercises, pacing and recovery breathing.
Interactive components of the SELF-BREATHE intervention encourage patients to monitor their own progress and will help to establish these techniques within a patient’s day-to-day life.
The burden of chronic breathlessness on individuals, family, society and the NHS are significant, and have increased as a result of the Covid-19 pandemic. At the same time, it has become harder for patients experiencing breathlessness to access in-person support services. We hope that this intervention will lead to patients finding it easier to access effective treatment for chronic breathlessness, a reduction in unnecessary hospital attendances, and improved patient health
The researchers have tested SELF-BREATHE in a feasibility randomised controlled trial (i.e. SELF-BREATHE in addition to standard NHS healthcare for breathlessness versus NHS healthcare alone)
Patients were recruited from specialist out-patient clinics and services in south London (virtual and face to face), where there is high prevalence of chronic breathlessness. This includes respiratory medicine, lung cancer, bronchiectasis, interstitial lung disease, cystic fibrosis, respiratory physiotherapy and integrated respiratory team services.
The research team are now analysing the data. By the end of the study, the researchers expect to deliver:
The research team includes colleagues at King’s College Hospital NHS Foundation Trust, Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, Princess Royal University Hospital, and King’s Clinical Trials Unit.