Services providing holistic health care can improve the psychological well-being of people who are living with breathlessness associated with chronic or advanced lung disease, such as lung cancer or chronic obstructive pulmonary disease. Breathlessness is a distressing symptom in which feelings of fear and helplessness, social isolation, high levels of anxiety and significant carer burden are common experiences.
Drugs can have limited effectiveness in advanced disease and do not address the underlying psychosocial problems that can worsen symptoms. Holistic breathlessness services can help patients manage breathlessness more effectively through patient-centred approaches addressing breathing training, relaxation techniques and psychological support.
This NIHR-funded UK based study provides a reliable basis for the development of holistic breathlessness services to improve the quality of life for people with chronic or advanced lung disease.
Why was this study needed?
Breathlessness is a common condition often found in people with advanced-stage non-curative illnesses such as chronic lung disease. Shortness of breath affects nearly all of the one million people in this group in the UK and can occur even at rest. It can be the cause of significant suffering to patients and be profoundly disruptive to daily life.
Breathlessness is a major trigger for hospital admissions resulting in high costs to the NHS. It accounts for 700,000 hospital admissions and the use of over 6 million beds per year. Services offering a range of holistic drug and non-drug based healthcare to help patients manage their breathlessness have been developed.
The range, impact and effectiveness of these services are not yet fully understood. This study aimed to bring together evidence on holistic breathlessness services for people with advanced disease to help inform future practice.
What did this study do?
The study used mixed methods to combine a range of evidence. A systematic review of 37 studies assessed the clinical effectiveness, cost-effectiveness and acceptability of holistic breathlessness services. Secondly, data from three trials with a total of 259 patients were combined to look at what characteristics made it more likely that patients would respond well to the holistic services. Finally, an expert consultation was held using a group workshop and survey to identify healthcare professional, researcher, patient and carer priorities for services.
Combining different types of research was a strength of this study. The evidence included, however, drew mainly from services in the UK for people with lung cancer and may, therefore, have limited applicability for those with other lung conditions.
What did it find?
- Those receiving holistic service interventions had reduced distress due to breathlessness according to the Numeric Rating Scale (NRS) of 0 to 10, with higher scores indicating more distress (mean difference [MD] -2.30, 95% confidence interval [CI] -4.43 to -0.16).
- Holistic services had a small positive impact on depressive symptoms according to the Hospital Anxiety and Depression Scale [HADS] of 0 to 21, with higher scores reflecting more symptoms (MD -1.67, 96% CI -2.52 to -0.81).
- People with the lowest level of perceived control of their disease and the most distress were more likely to benefit from holistic breathlessness services.
- Patients reported high levels of satisfaction with services, particularly those that offered person-centred care from expert staff, education, information sharing and self-management support. However, evidence supporting the cost-effectiveness of services was inconclusive.
Stakeholders reached consensus that breathlessness services should be flexible, person-centred, have wide geographical reach and draw on expertise from multiple disciplines and providers. Family and carer involvement was also identified as being important alongside breathlessness management skills sharing between health professionals and informal carers.
What does current guidance say on this issue?
The holistic aspects of care for breathlessness in advanced disease currently receive less acknowledgement than the clinical management of the condition in general UK guidelines such as the NICE Clinical Knowledge Summaries. However, the NIHR and Marie Curie-sponsored 2016 RAND Living with Breathlessness survey suggests a move towards person-centred care and greater support for patients and carers.
Non-drug interventions based on psychological support, breathing control and coping strategies for breathlessness, delivered by a multidisciplinary group is also recommended within the NICE guidelines for lung cancer and dyspnoea management within palliative care.
What are the implications?
Helping patients effectively manage their breathlessness is critical to relieving distress. A holistic approach to health care for breathlessness is the preferred form of service delivery by those with advanced-stage disease.
This research supports an emphasis on person-centred approaches that involve expert professionals from a range of disciplines and informal carers. It provides evidence upon which to base the development of guidelines and the commissioning of healthcare services.
Citation and Funding
Maddocks M, Brighton L J, Farquhar M et al. Holistic services for people with advanced disease and chronic or refractory breathlessness: a mixed-methods evidence synthesis. Health Serv Deliv Res. 2019;7(22).
This research was funded by the NIHR Health Services and Delivery Research Programme (project number 16/02/18).
British Lung Foundation. The battle for breath: the impact of lung disease in the UK. London: British Lung Foundation; 2016.
NICE. Breathlessness. Clinical Knowledge Summary. London: National Institute for Health and Care Excellence; 2017.
NICE. Lung cancer: diagnosis and management. NG122. London: National Institute for Health and Care Excellence; 2019.
NICE. Palliative care: dyspnoea. Clinical Knowledge Summary. London: National Institute for Health and Care Excellence; 2016.
Powell B. Managing breathlessness in advanced disease. Clin Med. 2014;14;308-11.
Saunders C, Burge P, Farquhar M et al. Agreement with, and feasibility of, the emerging recommendations from the living with breathlessness study. Cambridge: RAND; 2016.
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