A catalyst for change in breathlessness research
6th November 2019
A new report from the Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation explores how their research and practice has impacted the treatment of breathlessness on a global scale.
Affecting more than 75 million people every year, breathlessness is a complex symptom that requires accurate clinical diagnosis. This newly published Breathlessness Impact Report explores how the Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation has helped pave the way for improved management and treatment of breathlessness for patients across the world, and what more can be done in this field.
As stated by Rob George, Consultant Physician Palliative Care and Honorary Professor of Palliative Care at King’s College London and Medical Director at St Christopher’s Hospice:
The Cicely Saunders Institute has ‘catalysed the whole movement of taking breathlessness seriously and looking at it systematically’.
In 2004, the Cicely Saunders Institute established a multi-professional international collaboration of researchers and clinicians to conduct this research. Over this time, continued visits to research fellows and PhD students has given the Institute the global reach that has helped spread awareness of the importance of research into breathlessness.
These connections have ensured Cicely Saunders Institute’s research articles have stood the test of time. One example of this is their 2014 Lancet article on a Randomised Controlled Trial into ‘an integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness’, which remains extremely influential to this day.
How the Cicely Saunders Institute has changed the face of research into breathlessness
A key contributor in this field is the Institute’s Integrated Breathlessness Support Service (IBSS). Its significance and impact are acknowledged by all 29 individuals interviewed for this report, from palliative care doctors to chest physicians.
This IBSS is an interdisciplinary service that provides outpatient clinic visits and home assessment over a six-week period. Patients are seen by respiratory and palliative care physicians and their carers have access to a social worker. Patients are also provided with a Breathlessness Support Service Toolkit with factsheets and resources. The service focuses on improving diagnosis and self-management of breathlessness to enhance patient’s overall quality of life.
The framework of this service has since been adapted for several health systems, from Singapore to Australia. In reflecting on the IBSS, all interviewees were convinced of the value of the service and patient satisfaction with it. As a result of this work, the Cicely Saunders Institute has received a number of large grants to explore how they can continue to support patients by lessening their sensation in intensity of breathlessness.
The influence of the Cicely Saunders Institute stretches even further, having been referred to in numerous policy documents both in the UK and internationally. For example, The German National Guidelines on Palliative Care for People with Cancer cites articles from the Cicely Saunders Institute as evidence of best practice.
While the Integrated Breathlessness Support Service has proven its value, the team recognises there is still more work to be done to effectively address the symptom of breathlessness.
The report addresses some of the financial and structural barriers that come with establishing this kind of service, and potential next steps to further promote integrated support services.
Read the full report here: Impact of the Breathlessness Research Programme on clinical practice and patient care.