Background and objective Recall of breathlessness is important for clinical care but might differ from the experienced (momentary) symptoms. This study aimed to characterize the relationship between momentary breathlessness ratings and the recall of the experience. It is hypothesized that recall is influenced by the peak (worst) and end (most recent) ratings of momentary breathlessness (peak-end rule). Methods This study used mobile ecological momentary assessment (mEMA) for assessing breathlessness in daily life through an application installed on participants' mobile phones. Breathlessness ratings (0-10 numerical rating scale) were recorded throughout the day and recalled each night and at the end of the week. Analyses were performed using regular and mixed linear regression. Results Eighty-four people participated. Their mean age was 64.4 years, 60% were female and 98% had modified Medical Research Council (mMRC) >= 1. The mean number of momentary ratings of breathlessness provided was 7.7 ratings/participant/day. Recalled breathlessness was associated with the mean, peak and end values of the day. The mean was most closely associated with the daily recall. Associations were strong for weekly values: peak breathlessness (beta = 0.95, r(2) = 0.57); mean (beta = 0.91, r(2) = 0.53); and end (beta = 0.67, r(2) = 0.48); p < 0.001 for all. Multivariate analysis showed that peak breathlessness had the strongest influence on the breathlessness recalled at the end of the week. Conclusion Over 1 week, recalled breathlessness is most strongly influenced by the peak breathlessness; over 1 day, it is mean breathlessness that participants most readily recalled.

Nurses routinely assess pain in hospitalized patients; similar assessment of dyspnea is increasing. Most nurses start with a yes–no question when assessing pain or dyspnea; many record “no” as a zero rating, skipping the rating scale. We tested the hypothesis that recording “no” answers as “zero” fails to detect the symptoms that would have been detected with a rating scale. Nurses asked 60 patients yes–no questions about the presence of dyspnea and pain, then asked patients to rate the symptoms using a 0–10 scale. All “yes” answers were followed by a concordant rating (i.e., greater than zero). More than 25% of “no” answers were followed by a discordant rating (> zero). Documenting “no” as “zero” missed information potentially useful in care planning; patients who rate dyspnea above zero are at greater risk of adverse outcomes. This information can also provide opportunity to start a discussion with patients who may benefit from symptom management.

Purpose A conceptual framework is proposed to better understand the experience of people who have dyspnea (breathing discomfort) when speaking: its nature, its physiological mechanisms, and its impacts on their lives. Method The components of the framework are presented in their natural order. They are a Speaking Domain (Speaking Activities and Speaking Variables), a Physiological Domain (Speech Breathing Variables and Physiological Mechanisms), a Perceptual Domain (Dyspnea), a Symptom Impact Domain (Emotional Responses, Immediate Behavioral Responses, and Long-Term Behavioral Response), and a Life Impact Domain (Short-Term Impacts and Long-Term Impacts). Results We discuss literature that most directly supports these components and includes findings from healthy people and those with disorders in whom speaking dyspnea was either evoked or measured. Caveats are noted where information is limited and further study is needed. A case example is provided to illustrate how to apply the framework. Conclusions This framework provides a broader view of the elements that contribute to the experience of speaking dyspnea. It is meant to guide researchers, clinicians, instructors, caregivers, and those for whom speaking dyspnea is a daily or even a life-long challenge.

The sensation that develops as a long breath hold continues is what this article is about. We term this sensation of an urge to breathe "air hunger." Air hunger, a primal sensation, alerts us to a failure to meet an urgent homeostatic need maintaining gas exchange. Anxiety, frustration, and fear evoked by air hunger motivate behavioral actions to address the failure. The unpleasantness and emotional consequences of air hunger make it the most debilitating component of clinical dyspnea, a symptom associated with respiratory, cardiovascular, and metabolic diseases. In most clinical populations studied, air hunger is the predominant form of dyspnea (colloquially, shortness of breath). Most experimental subjects can reliably quantify air hunger using rating scales, that is, there is a consistent relationship between stimulus and rating. Stimuli that increase air hunger include hypercapnia, hypoxia, exercise, and acidosis; tidal expansion of the lungs reduces air hunger. Thus, the defining experimental paradigm to evoke air hunger is to elevate the drive to breathe while mechanically restricting ventilation. Functional brain imaging studies have shown that air hunger activates the insular cortex (an integration center for perceptions related to homeostasis, including pain, food hunger, and thirst), as well as limbic structures involved with anxiety and fear. Although much has been learned about air hunger in the past few decades, much remains to be discovered, such as an accepted method to quantify air hunger in nonhuman animals, fundamental questions about neural mechanisms, and adequate and safe methods to mitigate air hunger in clinical situations. © 2021 American Physiological Society. Compr Physiol 11:1449-1483, 2021.

Because dyspnoea is seldom experienced by healthy people, it can be hard for clinicians and researchers to comprehend the patient’s experience. We collected patients’ descriptions of dyspnoea in their own words during a parent study in which 156 hospitalised patients completed a quantitative multidimensional dyspnoea questionnaire. These volunteered comments describe the severity and wide range of experiences associated with dyspnoea and its impacts on a patients’ life. They provide insights not conveyed by structured rating scales. We organised these comments into the most prominent themes, which included sensory experiences, emotional responses, self-blame and precipitating events. Patients often mentioned air hunger (‘Not being able to get air is the worst thing that could ever happen to you.’), anxiety, and fear (‘Scared. I thought the world was going to end, like in a box.’). Their value in patient care is suggested by one subject’s comment: ‘They should have doctors experience these symptoms, especially dyspnoea, so they understand what patients are going through.’ Patients’ own words can help to bridge this gap of understanding.

PURPOSE:To determine if people with Parkinson's disease (PD) experience dyspnea (breathing discomfort) during speaking.METHOD:The participants were 11 adults with PD and 22 healthy adults (11 young, 11 old). Participants were asked to recall experiences of breathing discomfort across different speaking contexts and provide ratings of those experiences (Retrospective ratings); then they rated the breathing discomfort experienced while performing speaking tasks that were designed to differ in respiratory demands (immediate Post-Speaking ratings).RESULTS:Participants with PD reported experiencing breathing discomfort during speaking significantly more frequently (approximately 60 % of the time) than did healthy participants (less than 20 % of the time). Retrospective ratings did not differ significantly from Post-Speaking ratings. Breathing discomfort was experienced by the fewest number of participants with PD for Conversation (two) and Extemporaneous Speaking (three) and by the greatest number for Extended Reading (ten) and Long Counting (nine), although the magnitude of the ratings generally reflected only "Slight" discomfort. Breathing discomfort was most frequently described as air hunger and breathing work, less frequently as mental effort, and very rarely as lung tightness. A few participants with PD reported experiencing emotions associated with their breathing discomfort and most reported using strategies to avoid breathing discomfort in their daily lives.CONCLUSIONS:Individuals with PD are more apt to experience speaking dyspnea than healthy individuals, especially when speaking for extended periods or when using long breath groups. Such dyspnea may contribute to a tendency to avoid speaking situations and thereby impair quality of life.

BackgroundBreathlessness, the subjective sensation of breathing discomfort, is common and appears in the daily life of people with cardiorespiratory diseases. Physicians often rely on patient’s history based on symptom recall. The relation between recalled and experienced breathlessness is still poorly understood. This paper presents the protocol for a study primarily aimed at evaluating the relationship between experienced breathlessness and (1) recalled breathlessness and (2) predicted future breathlessness.MethodsA mobile phone application will be used to collect data during daily life. Medically stable participants, ≥18 years of age with mean daily breathlessness of Numerical Rating Scale (NRS) 3/10 and able to use a mobile phone with internet will rate their breathlessness intensity on a 0–10 NRS prompted the user several times daily for 1 week. Participants will recall their breathlessness each day and week. Multivariable random effects regression models will be used for statistical analyses.ResultsResults of the study will be submitted for publication in peer-reviewed journals and presented at relevant conferences.DiscussionThis protocol describes a study aimed at investigating previously unknown areas of the experience and recall of breathlessness using a new method of data collection.Registration detailsProspectively registered with ClinicalTrials.gov (Nr:NCT03468205).Ethics and disseminationThe study has received ethical approval from the Regional Ethical Review Board Lund (DNr 2017/149). After a general study information including that participation is entirely voluntary, participants will answer the eligibility criteria and be asked to consent to participate before entering the study questions. Written informed consent to participate will be obtained for participants in the clinical sub-cohort. Participation can be discontinued at the discretion of the participant in which case no further data will be collected.

BACKGROUND: Dyspnea is prevalent among hospitalized patients but little is known about the experience of dyspnea among inpatients. We sought to characterize the multiple sensations and associated emotions of dyspnea in patients admitted with dyspnea to a tertiary care hospital. METHODS: We selected patients who reported breathing discomfort of at least 4/10 on admission (10 = unbearable). Research staff recruited 156 patients within 24 hours of admission and evaluated daily patients' current and worst dyspnea with the Multidimensional Dyspnea Profile; patients participated in the study 2.6 days on average. The Multidimensional Dyspnea Profile assesses overall breathing discomfort (A(1)), intensity of five sensory qualities of dyspnea, and 5 negative emotional responses to dyspnea. Patients were also asked to rate whether current levels of dyspnea were "acceptable." RESULTS: At the time of the first research interview, patients reported slight to moderate dyspnea (A(1) median 4); however, most patients reported experiencing severe dyspnea in the 24 hours before the interview (A(1) mean 7.8). A total of 54% of patients with dyspnea >= 4 on day 1 found the symptom unacceptable. The worst dyspnea each day in the prior 24 hours usually occurred at rest. Dyspnea declined but persisted through hospitalization for most patients. "Air hunger" was the dominant sensation, especially when dyspnea was strong (>4). Anxiety and frustration were the dominant emotions associated with dyspnea. CONCLUSIONS: This first multidimensional portrait of dyspnea in a general inpatient population characterizes the sensations and emotions dyspneic patients endure. The finding that air hunger is the dominant sensation of severe dyspnea has implications for design of laboratory models of these sensations and may have implications for targets of palliation of symptoms.

Aerosolized furosemide has been shown to relieve dyspnea; nevertheless, all published studies have shown great variability in response. This dyspnea relief is thought to result from the stimulation of slowly adapting pulmonary stretch receptors simulating larger tidal volume. We hypothesized that better control over aerosol administration would produce more consistent dyspnea relief; we used a clinical ventilator to control inspiratory flow and tidal volume. Twelve healthy volunteers inhaled furosemide (40mg) or placebo in a double blind, randomized, crossover study. Breathing Discomfort was induced by hypercapnia during constrained ventilation before and after treatment. Both treatments reduced breathing discomfort by 20% full scale. Effectiveness of aerosol furosemide treatment was weakly correlated with larger tidal volume. Response to inhaled furosemide was inversely correlated to furosemide blood level, suggesting that variation among subjects in the fate of deposited drug may determine effectiveness. We conclude that control of aerosol delivery conditions does not improve consistency of treatment effect; we cannot, however, rule out placebo effect.

Morélot-Panzini and colleagues response to the paper by Johnson et al. [1] is an important contribution to the debate about the chronic breathlessness syndrome, which I called for in my editorial [2] and to which others have already contributed [3, 4]. English is a greedy language using words that mean the same in their original tongue to denote slight differences in meaning in English. In this case, dyspnoea is the technical term for breathlessness. In 40 years of clinical practice I never met a patient who complained of dyspnoea but saw many who were greatly affected by what they called breathlessness. This distinction between the symptom and its impact are at the heart of the discussions around the chronic breathlessness syndrome. I strongly support the need to provide more holistic care that looks at the consequences of breathlessness as well as their causes. However, important secondary effects on mood, behaviour and lifestyle occur in many chronic conditions not fully controlled by medical-management strategies. Should we refer to chronic arthritis syndrome or chronic cluster headache syndrome or any of the numerous other examples which readily suggest themselves? Whether or not we use the word syndrome these patients need better care than they currently receive. Chronic breathlessness is an under-recognised problem irrespective of the terminology used to describe it

In the ‘placebo arm’ of a recent study, we found that aerosol saline (sham treatment) produced substantial relief of laboratory-induced dyspnea (Breathing discomfort—BD) in nearly half the subjects. The sham intervention included a physiological change, and instructions to subjects could have produced expectation of dyspnea relief. In the present study, we attempted to discover whether the response to sham aerosol was driven by behavioral or physiological aspects of the intervention.

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 generatedviaexpert 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. Thea prioritarget 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.

There is growing awareness that dyspnoea, like pain, is a multidimensional experience, but measurement instruments have not kept pace. The Multidimensional Dyspnea Profile (MDP) assesses overall breathing discomfort, sensory qualities, and emotional responses in laboratory and clinical settings. Here we provide the MDP, review published evidence regarding its measurement properties and discuss its use and interpretation. The MDP assesses dyspnoea during a specific time or a particular activity (focus period) and is designed to examine individual items that are theoretically aligned with separate mechanisms. In contrast, other multidimensional dyspnoea scales assess recalled recent dyspnoea over a period of days using aggregate scores. Previous psychophysical and psychometric studies using the MDP show that: 1) subjects exposed to different laboratory stimuli could discriminate between air hunger and work/effort sensation, and found air hunger more unpleasant; 2) the MDP immediate unpleasantness scale (A1) was convergent with common dyspnoea scales; 3) in emergency department patients, two domains were distinguished (immediate perception, emotional response); 4) test-retest reliability over hours was high; 5) the instrument responded to opioid treatment of experimental dyspnoea and to clinical improvement; 6) convergent validity with common instruments was good; and 7) items responded differently from one another as predicted for multiple dimensions.