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A delphi process defining 'chronic breathlessness syndrome': A distinct clinical entity

Miriam Johnson, Janelle Yorke, David Currow
European Respiratory Journal 2016 48: PA3754; DOI: 10.1183/13993003.congress-2016.PA3754
Miriam Johnson
1Hull York Medical School, University of Hull, Hull, United Kingdom
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Janelle Yorke
2School of Nursing, Midwifery and Social Work, University of Manchester, Manchester, United Kingdom
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David Currow
3Discipline of Palliative and Supportive Services, Flinders University, Adelaide, Australia
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Abstract

Background: A clinical syndrome is a cluster of clinical findings due to underlying aetiologies and has implications for clinical practice, research and health policy.

Aims: To address, “Is breathlessness that persists at rest or on minimal exertion despite the optimal treatment of underlying causes a distinct clinical syndrome and, if so, (a) what should it be called, and (b) how should it be defined?

Methods: A Delphi process was conducted amongst respiratory and cardiovascular medicine/nursing, respiratory physiology, neuroimaging, intensive care, oncology, palliative care and primary care experts:

1. Consultation to define areas for the survey (n=17).

2. Three Delphi survey rounds (n= 34; n=25; n=29).

Results:

1. Experts from US, Europe, Australia & Canada were consulted to frame the Delphi survey. It was agreed:

i) breathlessness despite optimal treatments of underlying causes was a clinical syndrome with negative consequences for patients;

ii) recognition should influence clinical practice, research, service provision and policy;

iii) to put forward suggested names and definitions.

2. By survey 3: 76% respondents agreed the name, “chronic breathlessness syndrome” defined as: breathlessness even though “…evidence-based treatments of underlying pathophysiology are optimised” (66%) and “contributes to physical limitations and/or a variety of adverse psychosocial, spiritual or other consequences” (83%). The term “chronic” did not need a stated duration (80%).

Conclusions: “Chronic breathlessness syndrome” is a valid and relevant clinical concept needing active diagnosis and use of evidence-based therapies to systematically reduce suffering for the millions of affected people.

  • Palliative care
  • Rehabilitation
  • Quality of life
  • Copyright ©the authors 2016
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A delphi process defining 'chronic breathlessness syndrome': A distinct clinical entity
Miriam Johnson, Janelle Yorke, David Currow
European Respiratory Journal Sep 2016, 48 (suppl 60) PA3754; DOI: 10.1183/13993003.congress-2016.PA3754

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A delphi process defining 'chronic breathlessness syndrome': A distinct clinical entity
Miriam Johnson, Janelle Yorke, David Currow
European Respiratory Journal Sep 2016, 48 (suppl 60) PA3754; DOI: 10.1183/13993003.congress-2016.PA3754
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