Breathlessness is one of the most common symptoms affecting patients. It impairs the ability to undertake the activities of daily living, reduces social contact and in more advanced disease becomes more isolating (patients cannot talk) and is a frequent cause of hospital admissions.
Caregivers often report a feeling of helplessness while watching their nearest ones suffer. Clinicians experience similar feelings due to the lack of effective interventions.
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 also find it challenging to deal with. 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.
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:
What are we planning next?
Our findings on episodic breathlessness have implications for the treatment of episodic breathlessness since short acting drugs in use have a longer onset of action compared to the duration of episodes.
The Breathlessness Support Service provided targeted and effective multi-professional support directly to patients affected by breathlessness, irrespective of diagnosis and reported high levels of patient and carer satisfaction.
The service has reported high levels of patient satisfaction (over 80%) and all patients reported that they would recommend the service to someone else.
In a randomised clinical trial patients who received the Breathlessness Support Service had 16% better quality of life and better survival than the control group.
Who is supporting this work?
We are now working with commissioners and others to help this be widely available.
This work has been supported by Cicely Saunders International and the National Institute for Health Research.
Read more about our breathlessness related publications here