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Chronic breathlessness: re-thinking the symptom

Miriam J. Johnson, Janelle Yorke, John Hansen-Flaschen, Magnus Ekström, David C. Currow
European Respiratory Journal 2018 51: 1800340; DOI: 10.1183/13993003.00340-2018
Miriam J. Johnson
1Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK
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Janelle Yorke
2School of Nursing, Midwifery and Social Work, University of Manchester, Manchester, UK
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John Hansen-Flaschen
3Perelman School of Medicine, Hospital of the University of Pennsylvania, Philadelphia, PA, USA
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Magnus Ekström
4Dept of Clinical Sciences, Division of Respiratory Medicine and Allergology, Lund University, Lund, Sweden
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David C. Currow
1Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK
5Faculty of Health, University of Technology Sydney, Sydney, Australia
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Abstract

Chronic breathlessness: designation as a clinical syndrome to encourage clinicians to ask patients routinely if they are living with this neglected and often invisible symptom and, if so, how it impacts on their lives http://ow.ly/QqtY30iWKSb

To the Editor:

We agree with much presented by Mcnaughton et al. [1] in their response to our proposed chronic breathlessness syndrome, and appreciate their supportive comments [2]. In particular, we agree that patients and their carers must be at the centre of the next steps, as we stated, “Importantly, the involvement of patients and family caregivers in the development of consensus can now be addressed given the frame which this initial work provides” [2].

However, they state concerns that delineation as a syndrome would cause “further medicalisation of breathlessness” and “drive people with breathlessness further underground”. We are unaware of any evidence to indicate that delineation of a syndrome will reduce patients' ability or willingness to discuss this symptom with their clinicians. Rather, the converse appears to be the case. For example, we now have better recognition and management of delirium, sepsis and heart failure: all clinical syndromes of previously neglected clinical presentations. Clinical practice operates on a system of patterns and frameworks, and whilst we await the views of patients and carers with interest, we hope that designation as a clinical syndrome will encourage clinicians to initiate routine enquiry with their patients about whether they are living with chronic breathlessness and, if so, how it impacts on their lives, in order to provide evidence-based management. In clinical practice and research, patients living with chronic breathlessness welcome a symptom-targeted enquiry [3, 4]. It is difficult to see how, by encouraging clinicians to actively identify and respond to chronic breathlessness, this could drive the symptom “further underground”.

Footnotes

  • Conflict of interest: D.C. Currow is an unpaid advisory board member for Helsinn Pharmaceuticals; a paid consultant and receives payment for intellectual property with Mayne Pharma; and is a consultant with Specialist Therapeutics Australia Pty. Ltd.

  • Received February 15, 2018.
  • Accepted February 16, 2018.
  • Copyright ©ERS 2018

References

  1. ↵
    1. Macnaughton J,
    2. Oxley R,
    3. Rose A, et al.
    Chronic breathlessness: re-thinking the symptom. Eur Respir J 2018; 51: 1702331.
    OpenUrlAbstract/FREE Full Text
  2. ↵
    1. Johnson MJ,
    2. Yorke J,
    3. Hansen-Flaschen J, et al.
    Towards an expert consensus to delineate a clinical syndrome of chronic breathlessness. Eur Respir J 2017; 49: 1602277.
    OpenUrlAbstract/FREE Full Text
  3. ↵
    1. Johnson MJ,
    2. Booth S,
    3. Currow DC, et al.
    A mixed-methods, randomized, controlled feasibility trial to inform the design of a phase III trial to test the effect of the handheld fan on physical activity and carer anxiety in patients with refractory breathlessness. J Pain Symptom Manage 2016; 51: 807–815.
    OpenUrl
  4. ↵
    1. Clark AL,
    2. Johnson MJ,
    3. Fairhurst C, et al.
    Long term oxygen therapy for quality of life for people with chronic heart failure: a pragmatic, mixed-methods randomized controlled trial. Health Technology Assessment 2015; 19: 1–148.
    OpenUrlCrossRef
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Chronic breathlessness: re-thinking the symptom
Miriam J. Johnson, Janelle Yorke, John Hansen-Flaschen, Magnus Ekström, David C. Currow
European Respiratory Journal Apr 2018, 51 (4) 1800340; DOI: 10.1183/13993003.00340-2018

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Chronic breathlessness: re-thinking the symptom
Miriam J. Johnson, Janelle Yorke, John Hansen-Flaschen, Magnus Ekström, David C. Currow
European Respiratory Journal Apr 2018, 51 (4) 1800340; DOI: 10.1183/13993003.00340-2018
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