Steffen T Simon1, Vera Weingärtner2, Irene J Higginson3, Hamid Benalia3, Marjolein Gysels3, Fliss E M Murtagh3, James Spicer4, Philipp Linde5, Raymond Voltz5, Claudia Bausewein6. 1. Department of Palliative Medicine, University Hospital of Cologne, Cologne, Germany; Center of Integrated Oncology (CIO) Cologne/Bonn, University Hospital of Cologne, Cologne, Germany; Institute of Palliative Care, Oldenburg, Germany. Electronic address: steffen@steffensimon.de. 2. Department of Palliative Medicine, University Hospital of Cologne, Cologne, Germany. 3. Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation-WHO Collaborating Centre for Palliative Care and Older People, King's College London, London, United Kingdom. 4. Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation-WHO Collaborating Centre for Palliative Care and Older People, King's College London, London, United Kingdom; Division of Cancer Studies, King's College London, London, United Kingdom. 5. Department of Palliative Medicine, University Hospital of Cologne, Cologne, Germany; Center of Integrated Oncology (CIO) Cologne/Bonn, University Hospital of Cologne, Cologne, Germany. 6. Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation-WHO Collaborating Centre for Palliative Care and Older People, King's College London, London, United Kingdom; Department for Palliative Medicine, University Hospital Munich, Munich, Germany.
Abstract
CONTEXT: 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.
CONTEXT: 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.
Authors: Tim Luckett; Jane Phillips; Miriam Johnson; Maja Garcia; Priyanka Bhattarai; Virginia Carrieri-Kohlman; Anne Hutchinson; Rebecca T Disler; David Currow; Meera Agar; Serra Ivynian; Richard Chye; Phillip J Newton; Patricia M Davidson Journal: BMJ Open Date: 2017-12-06 Impact factor: 2.692