Dr Steffen T Simon, Department of Palliative Medicine, University Hospital Cologne, Germany, explains the background to the longer article selected as ‘Editor’s Choice’ in the May issue of Palliative Medicine.
Breathlessness is a frequent and burdensome symptom for patients with life-limiting diseases. On average, half of patients with cancer (non curable) complain about breathlessness. Patients with advanced COPD (chronic obstructive pulmonary disease) or chronic heart failure experience breathlessness even more often, between 70-90% of them. Breathless patients mainly report two different expressions of breathlessness: continuous (to be breathless all the time) and episodic breathlessness. Episodes of breathlessness can occur alone or on top of continuous breathlessness and are described by patients as: “A horrible experience: dreadful, suffocating, it’s life-threatening,” or “You think you’re gonna die.” Episodic breathlessness is often associated with anxiety or panic.
However, episodic breathlessness has been rarely studied and only a few papers exist that describe and explore this type of breathlessness. To develop and evaluate management strategies in order to improve quality of life of breathless patients, we need to know more about this symptom. We need to know how frequently patients experience these episodes, what is the mean and range intensity at peak, how long do these episodes last, do they occur during the day, or at night, or both? Are there similarities in comparison to the concept of breakthrough pain? What are the differences? We need to know this because there might be options to use the same management strategies for episodic breathlessness as for breakthrough pain.
Therefore, our study group used a cohort study in Germany to ask patients about the characteristics of their episodes of breathlessness: frequency, duration, intensity, time of occurrence and others. Eighty-two patients with COPD or lung cancer described a total of 592 breathlessness episodes over a maximum period of 12 months.
Based on these patient reports we can now say that: the majority of episodes of breathlessness are only of short duration (median five minutes; 72% less than 10 minutes), often occur daily and are severe (mean breathlessness intensity 6.2/10). This result has an impact on the further development of management strategies: first, we need to increase our efforts in the development of non-pharmacological treatment options as the vast majority is not suitable for pharmacological interventions; (opioids such as fentanyl: time of onset is longer than the duration of episodes). Second, we need to explore which characteristics are most relevant for patients in order to know which characteristic we need to change (duration, intensity or frequency?). Third, we need to explore ways to prevent episodes of breathlessness – by non-pharmacological interventions (for example, pacing, walking aids and mobility devices, training in panic reduction, or others) or pharmacological interventions (for example, opioids, benzodiazepines, anti depression medication such as SSRI, or others).
Patients with episodic breathlessness need our help and support to better cope with this burdensome symptom and we need more studies to develop and evaluate the most beneficial and effective management strategies.
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This post relates to a longer article, Characteristics of episodic breathlessness as reported by patients with advanced chronic obstructive pulmonary disease and lung cancer: Results of a descriptive cohort study, by Weingärtner V, Scheve C, Gerdes V, Schwarz-Eywill M, Prenzel R, Otremba B, Mühlenbrock J, Bausewein C, Higginson IJ, Voltz R, Herich L, Simon ST; on behalf of PAALiativ; published in Palliative Medicine, 29(5):420-428, 2015. Published online before print January 29, 2015, doi: 10.1177/0269216314563428. EAPC members and registered users of the EAPC website can download a free copy of this article and other ‘Editor’s choice’ papers from the EAPC website. (If you need to register or login to download this paper please follow the instructions in the top right-hand corner of EAPC home page and scroll down to the article). Click here to view other EAPC-originated papers.