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Unpredictable episodic breathlessness in patients with advanced chronic obstructive pulmonary disease and lung cancer: a qualitative study

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Abstract

Purpose

The internationally consented definition and categorization describe two categories of episodic breathlessness: predictable (with known triggers) and unpredictable. The link of known triggers only to predictable episodes can be read that unpredictable episodes have none known trigger. Our aim was to illuminate patients’ experiences with episodes of unpredictable breathlessness, to collect descriptions of the episodes’ impact on the patients’ lives, and, in turn, the patients’ individual coping strategies in this connection.

Design

Qualitative study using semi-structured in-depth interviews with patients suffering from unpredictable episodes of breathlessness and chronic obstructive pulmonary disease (COPD; Global Initiative for Obstructive Lung Disease III and IV) or lung cancer (all stages). Interviews were audio-recorded, transcribed verbatim, and analyzed using Framework Analysis.

Results

One hundred one patients were screened in a large university hospital; ten participants fulfilled the inclusion criteria and provided consent. The experienced episodes were evaluated as unpleasant and with higher intensity compared to predictable episodes. Non-pharmacological interventions were identified as useful coping strategies. Interestingly, although patients experienced the episodes in an unpredictable manner, a trigger could be detected retrospectively for the majority of cases (mostly emotions (especially panic) and, occasionally, physical exertion). Unpredictable episodes are less frequent than previously assumed.

Conclusion

The unpredictability of unpredictable breathless episodes refers to the patients’ experience that these episodes occur “out-of-the-blue.” However, a known trigger can be identified for the majority of unpredictable breathless episodes. These are therefore triggered as well. Further research needs to describe more possible triggers, to inquire the prevalence of unpredictable episodic breathlessness, and to develop effective management strategies.

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Acknowledgements

The authors thank all participants of the study for their willingness to participate and give insights into their experiences. We thank the staff at the participating centers for their support on recruitment. Special thanks to Vera Weingärtner and Maren Piel for their professional advice. We would also like to thank Fabia Bertram for her support in proofreading as a native speaker.

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Correspondence to S. T. Simon.

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Informed consent was obtained from all individual participants included in the study. All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Conflict of interest

The authors declare that they have no conflicts of interest.

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Linde, P., Hanke, G., Voltz, R. et al. Unpredictable episodic breathlessness in patients with advanced chronic obstructive pulmonary disease and lung cancer: a qualitative study. Support Care Cancer 26, 1097–1104 (2018). https://doi.org/10.1007/s00520-017-3928-9

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  • DOI: https://doi.org/10.1007/s00520-017-3928-9

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