Don’t ask, don’t tell (DADT): under-recognition of breathlessness in clinical care—a national survey

Introduction The recognition of breathlessness in clinical practice appears suboptimal, despite its prevalence and impact. This study aimed to explore the content of clinical conversations about breathlessness and patients’ level of self-reported openness when discussing their breathlessness. Methods A cross-sectional, online survey of Australian adults (≥18 years) stratified to the 2016 National Census for age, sex, state/territory of residence and rurality. Assessments based on self-report included demographics, breathlessness (modified Medical Research Council (mMRC) breathlessness scale), breathlessness duration (months/years) and underlying condition (multiple-choice question), breathlessness-related topics discussed (multiple-choice question) and patients’ openness about breathlessness (multiple-choice question). Results Of 4245 respondents with mMRC ≥1 2311 (54%) reported discussing breathlessness with their clinician. The majority were patient-initiated conversations (94%; n=2179) where the proportion discussing >1 topic was higher with each mMRC level (34% mMRC1; 40% mMRC2; 50% mMRC3-4) in contrast with clinician-initiated conversations (32% mMRC1; 5% mMRC2; 22% mMRC3-4). Patient-initiated conversations prioritised discussing the topics ‘how the person feels’ (mMRC1) and ‘breathlessness’ impacts’ (mMRC2-4); clinician-initiated consultations prioritised ‘breathlessness’ impacts’ (mMRC1-2) and ‘how the person feels’ and ‘doubts/fears’ (mMRC3-4). Compared with clinician-initiated conversations, patient-initiated ones had a higher proportion of respondents reporting being completely open (73% vs 56%, mMRC1; 58% vs 7%, mMRC2; 75% vs 22%, mMRC3-4). Increasing openness was associated with increasing age, gender (women), smoking status (non-smokers) and underlying condition (lung disease). Conclusions Many patients are willing to discuss multiple aspects of their breathlessness but may not disclose the full extent of the symptom’s presence or impacts.