Chronic Breathlessness Explanations and Research Priorities: Findings From an International Delphi Survey
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CONTEXT: Explanations provided by health professionals may underpin helpful or harmful symptom beliefs and expectations of people living with chronic breathlessness. OBJECTIVES: This study sought perspectives from health professionals with clinical/research expertise in chronic breathlessness on priority issues in chronic breathlessness explanations and research. METHODS: Authors (n = 74) of publications specific to chronic breathlessness were invited to a three-round Delphi survey. Responses to open-ended questions (Round 1 "What is important to: include/avoid when explaining chronic breathlessness; prioritize in research?") were transformed to Likert scale (1-9) items for rating in subsequent rounds. A priori consensus was defined as ≥70% of respondents rating an item as important (Likert rating 7-9) and interquartile range ≤2. RESULTS: Of the 31 Round 1 respondents (nine countries, five professional disciplines), 24 (77%) completed Rounds 2 and 3. Sixty-three items met consensus (include n = 28; avoid n = 9; research n = 26). Explanations of chronic breathlessness should use patient-centered communication; acknowledge the distress, variability, and importance of this sensation; emphasize current management principles; clarify maladaptive beliefs and expectations; and avoid moral culpability and inappropriate reassurance. Research priorities included the need 1) for a comprehensive understanding of breathlessness science; 2) to optimize, explore, and develop effective interventions, both pharmacological and nonpharmacological; and 3) determine effective models of care including strategies for education and training of health professionals and people caring for, or living with, chronic breathlessness. CONCLUSION: These consensus-based concepts for chronic breathlessness explanations and research provide a starting point for conversations between patients, carers, clinicians, and researchers within the chronic breathlessness community.
