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Improving the quality of life of people with advanced respiratory disease and severe breathlessness

Booth, Sara; Johnson, Miriam J


Sara Booth


Advanced respiratory disease (ARD) imposes a greater symptom burden than many cancers but without comparable recognition of the need for supportive and palliative care or the infrastructure for its systematic delivery. Consequently, many people with ARD (and those closest to them) have a poor quality of life, disabled by chronic breathlessness, fatigue and other symptoms. They are socially isolated by the consequences of long-term illness and often financially impoverished. The past decade has seen an increasing realisation that care for this group must improve and that symptom management must be prioritised. Clinical guidelines recommend person-centred care – including access to supportive and palliative care as needed - as part of standard medical practice. Advanced lung disease clinics and specialist breathlessness services (pioneered within palliative care) are developing within respiratory medicine services but are provided inconsistently.
This review covers the comprehensive assessment of the patient with ARD, the importance of supporting carers and the current best practice in the management of breathlessness, fatigue and cough. It also suggests ways to incorporate person-centred care into the general respiratory clinic, assisted by better liaison with specialist palliative and primary care. Emerging evidence shows that excellent symptom management leads to better clinical outcomes and reduces inappropriate use of emergency medical services.

Journal Article Type Article
Publication Date Sep 1, 2019
Journal Breathe
Print ISSN 1810-6838
Electronic ISSN 2073-4735
Publisher European Respiratory Society
Peer Reviewed Peer Reviewed
Volume 15
Issue 3
Pages 198-215
APA6 Citation Booth, S., & Johnson, M. J. (2019). Improving the quality of life of people with advanced respiratory disease and severe breathlessness. Breathe, 15(3), 198-215.
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Copyright Statement
Copyright ©ERS 2019
Breathe articles are open access and distributed under the terms of the Creative Commons Attribution Non-Commercial Licence 4.0.

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