The difficulty of measuring and communicating breathlessness-a cognitive interview study

Problem

Breathlessness is a clinical problem as important as painthe predictive value of dyspnoea in forecasting medical needs is well known.(for example, studies show dyspnoea severity is a much stronger predictor of 5 year mortality than FEV1 (forced expiratory volume in 1 second).Breathlessness is a sensation affecting those living with chronic respiratory disease, obesity, heart disease and anxiety disorders. Yet most people find breathlessness hard to describe and clinicians often avoid asking about a symptom they can do nothing about. Until recently, most measurements of dyspnea treated it as a single entity. A new measure, the multidimensional dyspnoea profile (MDP) attempts to measure the incommunicable different sensory qualities (and emotional responses) of breathlessness. We were curious whether the MDP could support difficulties in communication between GPs and their patients.

Approach

We conducted a cognitive interview study, asking participants to think aloud their thoughts as they completed a relatively new validated respiratory questionnaire.We recruited 16 adults from four Breathe Easy groups to take part.A purposeful sampling strategy was adopted to represent (when possible) different stages in the clinical encounter (for example time since diagnosis, number of exacerbations), as well as gender, age and ethnicity. Participants were interviewed once, lasting between one and three hours. Cognitive interviews were digitally recorded on an encrypted recorder and transcribed verbatimAnalysis used both the digital audio file and verbatim transcripts as the former retains important features needed for interpretative analyses (e.g. hesitations, tones of uncertainty, indicators of irritation). The study was informed by an interest in sensorial anthropology, which considers how shared cultural templates of ‘what counts as a symptom’ evolve and how (in this study) the process of bodily sensations becoming symptoms may impact upon GP-patient communication about dyspnea.

Findings

Using cognitive interviews of respiratory questionnaires, we give examples of how the wording used to describe sensations are often at odds with the language those living with dyspnea understand or use. They struggle to comprehend and map their bodily experience of sensations associated with dyspnea to the words on the respiratory questionnaire.

Consequences

If tools such as the MDP are problematic in terms of capturing what is meaningful for patients living with breathlessnesswhere does this leave us in terms of asking patients about dyspnea? We suggest, along with David Currow, the very act of acknowledging the presence and impact of breathlessness is, in itself, a therapeutic intervention.