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

Research output: Contribution to journalArticle

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 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.

Details

Authors
  • Miriam J. Johnson
  • Janelle Yorke
  • John Hansen-Flaschen
  • Robert Lansing
  • Magnus Ekström
  • Thomas Similowski
  • David C. Currow
Organisations
External organisations
  • Hull York Medical School
  • University of Manchester
  • Hospital of the University of Pennsylvania
  • Beth Israel Deaconess Medical Center
  • Pitié Salpetriere University Paris
  • University of Technology Sydney
Research areas and keywords

Subject classification (UKÄ) – MANDATORY

  • Respiratory Medicine and Allergy
Original languageEnglish
JournalThe European respiratory journal
Volume49
Issue number5
Publication statusPublished - 2017 May 1
Publication categoryResearch
Peer-reviewedYes