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Towards an expert consensus to delineate a clinical syndrome of chronic breathlessness

Johnson, Miriam J. ; Yorke, Janelle ; Hansen-Flaschen, John ; Lansing, Robert ; Ekström, Magnus LU ; Similowski, Thomas and Currow, David C. (2017) In The European respiratory journal 49(5).
Abstract

Breathlessness that persists despite treatment for the underlying conditions is debilitating. Identifying this discrete entity as a clinical syndrome should raise awareness amongst patients, clinicians, service providers, researchers and research funders.Using the Delphi method, questions and statements were generated via expert group consultations and one-to-one interviews (n=17). These were subsequently circulated in three survey rounds (n=34, n=25, n=31) to an extended international group from various settings (clinical and laboratory; hospital, hospice and community) and working within the basic sciences and clinical specialties. The a priori target agreement for each question was 70%. Findings were discussed at a multinational... (More)

Breathlessness that persists despite treatment for the underlying conditions is debilitating. Identifying this discrete entity as a clinical syndrome should raise awareness amongst patients, clinicians, service providers, researchers and research funders.Using the Delphi method, questions and statements were generated via expert group consultations and one-to-one interviews (n=17). These were subsequently circulated in three survey rounds (n=34, n=25, n=31) to an extended international group from various settings (clinical and laboratory; hospital, hospice and community) and working within the basic sciences and clinical specialties. The a priori target agreement for each question was 70%. Findings were discussed at a multinational workshop.The agreed term, chronic breathlessness syndrome, was defined as breathlessness that persists despite optimal treatment of the underlying pathophysiology and that results in disability. A stated duration was not needed for "chronic". Key terms for French and German translation were also discussed and the need for further consensus recognised, especially with regard to cultural and linguistic interpretation.We propose criteria for chronic breathlessness syndrome. Recognition is an important first step to address the therapeutic nihilism that has pervaded this neglected symptom and could empower patients and caregivers, improve clinical care, focus research, and encourage wider uptake of available and emerging evidence-based interventions.

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author
organization
publishing date
type
Contribution to journal
publication status
published
subject
in
The European respiratory journal
volume
49
issue
5
publisher
Eur Respiratory Soc
external identifiers
  • pmid:28546269
  • scopus:85021830016
ISSN
1399-3003
DOI
10.1183/13993003.02277-2016
language
English
LU publication?
yes
id
24b6ea2b-2914-4767-9cb0-9c3583c0b0dd
date added to LUP
2019-02-01 15:13:12
date last changed
2020-07-08 04:40:52
@article{24b6ea2b-2914-4767-9cb0-9c3583c0b0dd,
  abstract     = {<p>Breathlessness that persists despite treatment for the underlying conditions is debilitating. Identifying this discrete entity as a clinical syndrome should raise awareness amongst patients, clinicians, service providers, researchers and research funders.Using the Delphi method, questions and statements were generated via expert group consultations and one-to-one interviews (n=17). These were subsequently circulated in three survey rounds (n=34, n=25, n=31) to an extended international group from various settings (clinical and laboratory; hospital, hospice and community) and working within the basic sciences and clinical specialties. The a priori target agreement for each question was 70%. Findings were discussed at a multinational workshop.The agreed term, chronic breathlessness syndrome, was defined as breathlessness that persists despite optimal treatment of the underlying pathophysiology and that results in disability. A stated duration was not needed for "chronic". Key terms for French and German translation were also discussed and the need for further consensus recognised, especially with regard to cultural and linguistic interpretation.We propose criteria for chronic breathlessness syndrome. Recognition is an important first step to address the therapeutic nihilism that has pervaded this neglected symptom and could empower patients and caregivers, improve clinical care, focus research, and encourage wider uptake of available and emerging evidence-based interventions.</p>},
  author       = {Johnson, Miriam J. and Yorke, Janelle and Hansen-Flaschen, John and Lansing, Robert and Ekström, Magnus and Similowski, Thomas and Currow, David C.},
  issn         = {1399-3003},
  language     = {eng},
  month        = {05},
  number       = {5},
  publisher    = {Eur Respiratory Soc},
  series       = {The European respiratory journal},
  title        = {Towards an expert consensus to delineate a clinical syndrome of chronic breathlessness},
  url          = {http://dx.doi.org/10.1183/13993003.02277-2016},
  doi          = {10.1183/13993003.02277-2016},
  volume       = {49},
  year         = {2017},
}