Defining the Experience of Breathlessness

Definition, Categorization, and Terminology of Episodic Breathlessness: Consensus by an International Delphi Survey

Simon ST, Weingärtner V, Higginson IJ, Voltz R, Bausewein C
J Pain Symptom Manage. 2014;47:828-838

Episodic Breathlessness

Episodic breathlessness is a common and distressing symptom in patients with advanced disease. However, breathlessness is not yet clearly defined. The aim of this project was to develop an international definition, categorization, and terminology of episodic breathlessness.

An online Delphi survey was conducted with international breathlessness experts. A structured questionnaire was used to identify specific aspects and reach agreement on a definition, categorization, and terminology using a 5-point Likert scale. Consensus was defined in advance as ≥ 70% agreement.

In the first, second, and third rounds, respectively, 31 of 68 (45.6%), 29 of 67 (43.3%), and 33 of 67 (49.3%) experts responded to the survey. Participants were 20-79 years old, about 60% were men, and more than 75% rated their expertise in breathlessness as moderate to high. After 3 rounds, consensus was reached on a definition, categorization, and terminology (84.4%, 96.3%, and 92.9% agreement).

The final definition includes general and qualitative aspects of the symptom -- for example, time-limited severe worsening of intensity or unpleasantness of breathlessness in the patient's perception. Categories are predictable or unpredictable, depending on whether any triggers can be identified.

Simon and colleagues concluded that there is high agreement on clinical and operational aspects of episodic breathlessness in advanced disease among international experts. The consensus definition and categorization may serve as a catalyst for clinical and basic research to improve symptom control and patients' quality of life.

Viewpoint

Breathlessness is a very common symptom associated with many chronic illnesses and at the end of life. It is also one of the most distressing of symptoms.^[1,2,3,4] There are both chronic and episodic forms of breathlessness. This paper focuses on episodic breathlessness. The investigators used a Delphi survey process to obtain expert opinion on a definition of episodic breathlessness. Preliminary definitions were developed with terminology and categorization to initiate the Delphi process, and the following final definition was agreed upon:

Episodic breathlessness is one form of breathlessness characterized by a severe worsening of breathlessness intensity or unpleasantness beyond usual fluctuations in the patient's perception.

Episodes are time-limited (seconds to hours) and occur intermittently, with or without underlying continuous breathlessness. Episodes may be predictable or unpredictable, depending on whether any trigger(s) can be identified. A range of known triggers can interact (eg, exertion, emotions, comorbidities, or external environment). One episode can be caused by one or more triggers.

The study authors describe the benefits of having this consensus definition to guide further clinical practice and research. It is an excellent example of the precise work needed to define symptoms, promote standardization in use of this symptom as a variable for research, and widen understanding of the impact of this symptom on patient distress and quality of life.

Deeper understanding of symptoms such as breathlessness is important for clinicians. The experience of this symptom for the patient may be quite different if breathlessness is episodic or acute as opposed to chronic. One implication for clinicians is to assess patients who report this symptom to determine the nature of their breathlessness (whether chronic or episodic) and to determine its triggers, if possible.

Over the past decades, researchers have strongly demonstrated that the symptom of pain is very subjective and that the physical symptom of breathlessness often is accompanied by intense psychological responses. Better understanding of breathlessness, beyond simply documenting that the patient has dyspnea, will also help in understanding what it means to the patient. For the increased numbers of patients living with and dying from cardiac and pulmonary diseases, assessment of dyspnea will become an important area of clinical practice.

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