Breathlessness is a common, distressing symptom which affects 75 million people worldwide and over two million in the UK. It increases as disease progresses and often becomes chronic or refractory, i.e. not responsive to treatment aimed at the underlying disease. It is frightening for patients and families, and results in reduced life expectancy and high health care costs.
Why focus on breathlessness?
What have we learned so far?
Breathlessness is a debilitating symptom experienced by patients with a wide range of different conditions and diagnoses, including COPD, lung cancer, heart failure and motor neurone disease. Carers, families and those close to patients experiencing breathlessness also find it challenging. Providing effective treatments and access to a specialist breathlessness service improves the quality of life of these patients.
We have learned that distress and disability are experienced by patients with breathlessness irrespective of their disease state. A lack of clear information leads to patients postponing contact with healthcare until they are at crisis point. Carers often do not have strategies to relieve the symptom and are ill prepared for exacerbations of the symptom. Carers experience disrupted sleep patterns and poor sleep quality, depression, and poor quality of life. This leads in turn to poor quality of patient care. Carers of breathlessness patients experience fewer positive caring experiences.
We observed that patients can experience brief episodes of severe breathlessness that are not described in research literature, and our research shows that this is common (experienced by more that 80% of patients).
We observed that breathlessness patients often become physically inactive, which can lead to deconditioning and gradual loss of independence. Even simple forms of exercise/movement can be difficult for out of breath patients.
Since 2004, King’s has spearheaded research to understand the effects of breathlessness on people affected by advanced diseases, and to develop and trial affordable, timely treatments, integrated care models and self-management tools that could be widely implemented.
King’s Research has so far:
- Found that breathlessness is common across many diseases, increases towards the end of life, and evaluated ways to assess it
- Raised the visibility of breathlessness as a distressing and isolating symptom of high cost to health and social care services, and to families
- Provided evidence for non-pharmacological therapies as a first step in management
- Developed and trialled novel toolkits and breathlessness services
- Collated definitive evidence on breathlessness services (BSs)
Breathlessness Support Service
We have developed a classification system based on patient experiences to better characterise the symptom, by including symptom duration and triggers. This provides a common language for clinicians and researchers to aid clinical assessment.
We have investigated non-pharmacological treatments for episodic breathlessness including:
- neuromuscular electrical stimulation (NMES)as an alternative method of enhancing leg muscle strength. NMES uses a lightweight stimulator unit to provide a controlled and comfortable contraction and relaxation of the underlying muscles. It can be self-administered at home while seated. We found that NMES had a favourable effect on thigh muscle and strength.
- hand-held fans are a method of improving the patient experience of breathlessness (a physiological method that is not fully understood)
- breathing training to improve mastery over breathlessness
- relaxation and energy conservation techniques
Breathlessness Support Service Tool Kit
The interventions we identified have been offered to patients as part of a Breathlessness Support Service. The service provides two outpatient clinic visits to the Cicely Saunders Institute and a home assessment over a six week period. Patients are seen by respiratory and palliative care physicians and their carer has access to a social worker. Patients are followed up by a home visit with an occupational therapist and a physiotherapist. Patients were provided with a Breathlessness Support Service Tool Kit (see next drop down menu "Breathlessness Support Service Tool Kit")
Breathlessness Support Service publications:
Higginson, IJ, Bausewein, C, Reilly, CC, Gao, W, Gysels, M, Dzingina, M, McCrone, P, Booth, S, Jolley, CJ & Moxham, J2014, 'An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial' The Lancet Respiratory Medicine, vol. 2, no. 12, pp. 979-987. DOI: 10.1016/S2213-2600(14)70226-7
Reilly, CC, Bausewein, C, Pannell, C, Moxham, J, Jolley, CJ & Higginson, IJ 2016, 'Patients' experiences of a new integrated breathlessness support service for patients with refractory breathlessness: Results of a postal survey ' Palliative medicine, vol. 30, no. 3, pp. 313-322 . DOI: 10.1177/0269216315600103
Gysels, M, Reilly, CC, Jolley, C, Pannell, C, Spoorendonk, F, Bellas, H, Madan, P, Moxham, J, Higginson, IJ & Bausewein, C2015, 'How does a new breathlessness support service affect patients?' European Respiratory Journal, vol. 46, no. 5, pp. 1515-1518. DOI: 10.1183/13993003.00751-2015
Gysels, M, Reilly, CC, Jolley, C, Pannell, C, Spoorendonk, F, Moxham, J, Bausewein, C & Higginson, IJ 2016, 'Dignity through integrated symptom management: lessons from the Breathlessness Support Service' Journal of pain and symptom management, vol. 52, no. 4, pp. 515-524. DOI: 10.1016/j.jpainsymman.2016.04.010
What impact has this had?
Patients were provided with the following Breathlessness Support Service Tool Kit:
Breathlessness Patient and Public Involvement (PPI)
For this previously neglected and poorly treated symptom, King’s research created a paradigm shift, leading to less stigma and better assessment, care and management of breathlessness for people irrespective of their underlying diseases.
King’s research developed and evaluated treatments and combined these into a self-management toolkit and new services. These connected previously separated clinical specialties and equipped health professionals, policy makers, commissioners and hospices to provide timely, proactive, multiprofessional care.
These innovations are recommended in guidance and implemented locally, nationally and across four continents. They have improved the lives, dignity, self-management and care of patients affected by breathlessness, and those important to them, across the globe.
In 2015, the independent NIHR dissemination report ‘Better Endings’ highlighted King’s breathlessness services (BSs) as a means to improve timely access to better multiprofessional care.
Underpinned by King’s collaborative research, breathlessness services have developed internationally including:
- Early Integrated Palliative Home Care (PHC) for end-stage Chronic Obstructive Pulmonary Disease patients in Belgium (link)
- The Munich Breathlessness Service in Germany (link)
- The Advanced Lung Disease Service in Australia, (link) and others in Singapore and Africa.
A 2020 national mapping exercise among Australian and New Zealand palliative care services found that 22% of respondents had integrated respiratory and palliative care BSs. Of those without BSs, 78% expressed interest in their establishment.
At the end of 2018, researchers from the Cicely Saunders Institute were awarded a small grant from Collaboration for Leadership in Applied Health Research Collaborative (CLAHRC) South London to launch a Breathlessness Patient and Public Involvement (PPI) group. This new group supports our portfolio of breathlessness research at the CSI, enabling breathlessness researchers and PPI members to collaborate on and champion the increasing and vital breathlessness related work taking place.
“Having stopped working a few years ago due to my health, I felt devalued and I try to seek ways to change this. Having the opportunity to be part of a group such as this can only be empowering as I discover something positive from having this condition. If my condition and the experiences connected to it can be of benefit to someone else, I am empowered!” – Breathlessness PPI member
For more information on PPI at the Cicely Saunders Institute (link)
The BETTER-B programme aims to significantly improve the treatment of severe breathlessness in patients with advanced disease by establishing whether Mirtazapine, currently used as an antidepressant, is an effective treatment to reduce severe breathlessness even when people are not depressed.
The BETTER-B main trial consists of a large-scale randomised controlled trial, which will study the effects on Mirtazapine on patients, their families or caregivers, as well as treatment and care costs. This patient-centred trial could result in reduced symptom burden and significant improvements in quality of life and well-being for patients and their family and friends. For more information on the BETTER-B programme, visit our website https://betterbreathe.eu/
Read more about our breathlessness related publications here