Breathlessness despite optimal pathophysiological treatment: on the relevance of being chronic

From the authors:

With regard to the letter from Morélot-Panzini and colleagues in response to our Perspective [1], it is good to see support for the concept of a clinical syndrome and its potential in raising awareness of the needs of such patients in the minds of all clinicians; we welcome the ongoing discussion. It serves to highlight the importance of this neglected patient group and clinical topic, as well as the process for how an internationally agreed name and definition in English can be translated both linguistically and culturally in non-English-speaking countries. This letter highlights the thought processes that will need to occur in each translation of the concept. In seeing this work already occurring, our Perspective [1] has already achieved one of its aims.

The comments in the letter mainly relate to these specific linguistic and cultural interpretations, whilst a few relate to the issue of the international name and definition. Taking each point in turn:

“Refractory”. Using the Delphi process described in the Perspective [1], candidate words already in use as well as those proposed de novo by members of the panel were considered. “Refractory” was one of several potential words considered. An earlier opinion piece was an integral part of the evolution of the concept of the syndrome [2]. The ultimate output of the Delphi process reflected the consensus of over 30 experts (see table S1 in [1]).

“Breathlessness” or “dyspnoea”. The discussion regarding this has already been described in detail in the Perspective piece [1]. The consensus relates to the internationally recognised name of the syndrome in English. The consensus was that the term should be that used by the lay public rather than healthcare professionals. Professionals will understand both, whereas the lay public may not understand “dyspnoea”, as one of the aims of a syndrome is to empower patients and their families to bring this concern to clinical notice. At least in English, “breathlessness” and “dyspnoea” are not interchangeable. For there to be a cultural and linguistic translation to languages other than English, it should be a term used by their lay public.

“Optimal treatment”. After much discussion during the consensus process and workshop, the term “optimal” used in the Perspective referred to the available, tolerated and patient-accepted evidence-based intervention(s) targeting the primary pathophysiological processes of the underlying disease [1]. This is not sufficiently clear in the Perspective piece, although touched on in table S1 [1]. There is no intention that patients should be deprived of interventions targeted at the symptomatic management of their breathlessness because they do not tolerate, refuse or cannot access state of the art treatment for their medical condition. On the contrary, one of the aims of defining such a clinical syndrome is to draw attention to the available breathlessness-targeted treatments. These should be used systematically alongside disease-directed treatments both whilst disease treatments are being optimised and thereafter. This also mandates the review of how breathlessness is being managed regularly in order to gain the best possible outcomes for patients and their families. For people with chronic breathlessness syndrome, attention to the need for and use of breathlessness-targeted treatment will still be reviewed regularly with each clinical encounter.

Syndrome. We agree with the points made in response to the editorial by Calverley [3] regarding the appropriateness of a syndrome relating to a single symptom. In addition, albeit one symptom, breathlessness is made up of a number of “qualitatively distinct sensations” as a result of the multidimensional nature of the patient experience.

Application and relevance to acute care medicine. As described in our Perspective [1], experts were specifically chosen because of their recognised skills from a range of clinical and laboratory backgrounds to ensure that the consensus took account of a broad range of opinion and experience (34 Delphi panel members). A significant number of acute care physicians were included although, as the surveys were anonymous (a key part of Delphi methodology so any one individual or group is less likely to influence the views of others), this would have been unknown to other survey members. Out of the 34 respondents in the first survey, at least 10 were senior physicians in acute specialties (general medicine, respiratory medicine, cardiology, care of the elderly, anaesthetics). Two authors on the Perspective paper have particular experience in acute and critical care. This subject was therefore assessed in some depth as part of the consensus process.

The context of disability was carefully chosen to distinguish that chronic breathlessness syndrome did not refer to acute breathlessness but rather to people experiencing breathlessness, with its consequent limitations, in their everyday lives. It highlighted that interventions are needed to remove the environmental and social barriers faced by people living with these disabilities [4]. The recently described “dyspnoea crisis” [5] was referred to in our Perspective to highlight that these two clinical aspects of breathlessness are distinct entities even though both relate to the person living with chronic breathlessness. This aspect has been picked up and further reinforced by an article recently published in the Annals of the American Thoracic Society [6]. The consensus panel felt that a stated time-frame was not needed to make this clear as there was a common understanding of the term in English and in medical parlance. However, that might need to be made more explicit, especially for those from non-English-speaking countries.

The term “chronic” was also felt to be useful in signalling “abnormal” breathlessness, distinct from the breathlessness experienced in health in appropriate response to both physical and emotional exertion. In addition, as previously discussed (in the section on optimal treatment), this syndrome does not preclude symptom management of breathlessness caused by acute insults, such as pneumonia and bronchoconstriction, which are expected to improve rapidly with treatment. Separate work is needed in order to learn how best to assess and treat the symptom of acute breathlessness in this situation, but this goes beyond the syndrome described in our Perspective [1].

We agree that it would be helpful to further define “optimal” as “available, tolerated and patient-accepted evidence-based intervention(s)” and to clarify that the “syndrome” refers to chronic as distinct from acute breathlessness. We conclude that the name “chronic breathlessness syndrome” should remain the internationally used English term, and reiterate that this will need to be translated according to other language and cultures, using the word(s) employed by the lay public when they visit their family physician, cardiologist or pulmonologist.

Disclosures