“I Can Breathe Again!” Patients' Self-Management Strategies for Episodic Breathlessness in Advanced Disease, Derived From Qualitative Interviews

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• 作者：Steffen T. Simon ; MD ; MSc^a ; ^b ; ^c ; ^{steffen@steffensimon.de" class="auth_mail" title="E-mail the corresponding author} ; Vera Weingä ; rtner ; Dr rer medic^a ; Irene J. Higginson ; BM ; BS ; BMedSci ; PhD ; FFPHM ; FRCP^d ; Hamid Benalia ; BSc ; MA^d ; Marjolein Gysels ; PhD^d ; Fliss E.M. Murtagh ; PhD ; MRCGP ; MSc^d ; James Spicer ; FRCP ; PhD ; MB ; BS ; BA^d ; ^e ; Philipp Linde^a ; ^b ; Raymond Voltz ; MD^a ; ^b ; Claudia Bausewein ; PhD ; MD ; MSc^d ; ^f
• 关键词：Coping ; dyspnea ; episodic breathlessness ; palliative care ; respiratory symptoms ; self-management
• 刊名：Journal of Pain and Symptom Management
• 出版年：2016
• 出版时间：August 2016
• 年：2016
• 卷：52
• 期：2
• 页码：228-234
• 全文大小：296 K

文摘

Episodic breathlessness causes additional distress to breathless patients with advanced disease, but management is still insufficient and there is a lack of knowledge on effective coping strategies.

Objectives

The aim was to explore patients' self-management strategies for episodic breathlessness.

Methods

In-depth interviews with patients suffering from episodic breathlessness as a result of chronic heart failure, chronic obstructive pulmonary disease, lung cancer, or motor neuron disease were conducted. Interviews were transcribed verbatim and analyzed guided by the analytic hierarchy of Framework analysis.

Results

A total of 51 participants were interviewed (15 chronic heart failure, 14 chronic obstructive pulmonary disease, 13 lung cancer, and nine motor neuron disease; age, mean [SD], 68 [12], 41% women, median Karnofsky index 60%). They described six main strategies for coping with episodes of breathlessness: reduction of physical exertion, cognitive and psychological strategies, breathing techniques and positions, air and oxygen, drugs and medical devices, and environmental and other strategies. Some strategies were used in an opposing way, e.g., concentrating on the breathing vs. distraction from any thoughts of breathlessness or laying down flat vs. standing up and raising hands.

Conclusion

Patients used a number of different strategies to cope with episodic breathlessness, adding more detailed understanding of existing strategies for breathlessness. The findings, therefore, may provide a valuable aid for health care providers, affected patients, and their relatives.