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

Context. Episodic breathlessness causes additional distress to breathless patients with advanced disease, but management isstill 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 transcribedverbatim 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, 13lung cancer, and nine motor neuron disease; age, mean [SD], 68 [12], 41% women, median Karnofsky index 60%). Theydescribed six main strategies for coping with episodes of breathlessness: reduction of physical exertion, cognitive andpsychological strategies, breathing techniques and positions, air and oxygen, drugs and medical devices, and environmentaland other strategies. Some strategies were used in an opposing way, e.g., concentrating on the breathing vs. distraction fromany 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 detailedunderstanding of existing strategies for breathlessness. The findings, therefore, may provide a valuable aid for health careproviders, affected patients, and their relatives.