title: "I Can Breathe Again!" Patients' Self-Management Strategies for Episodic Breathlessness in Advanced Disease, Derived From Qualitative Interviews.
abstract: 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.
  
  
  
  The aim was to explore patients' self-management strategies for episodic breathlessness.
  
  
  
  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.
  
  
  
  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.
  
  
  
  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.affiliation: 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.
authors.forename: Steffen T
authors.initials: ST
authors.lastname: Simon
authors.affiliation: Department of Palliative Medicine, University Hospital of Cologne, Cologne, Germany.
authors.forename: Vera
authors.initials: V
authors.lastname: Weingärtner
authors.affiliation: 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.
authors.forename: Irene J
authors.initials: IJ
authors.lastname: Higginson
authors.affiliation: 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.
authors.forename: Hamid
authors.initials: H
authors.lastname: Benalia
authors.affiliation: 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.
authors.forename: Marjolein
authors.initials: M
authors.lastname: Gysels
authors.affiliation: 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.
authors.forename: Fliss E M
authors.initials: FE
authors.lastname: Murtagh
authors.affiliation: 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.
authors.forename: James
authors.initials: J
authors.lastname: Spicer
authors.affiliation: Department of Palliative Medicine, University Hospital of Cologne, Cologne, Germany; Center of Integrated Oncology (CIO) Cologne/Bonn, University Hospital of Cologne, Cologne, Germany.
authors.forename: Philipp
authors.initials: P
authors.lastname: Linde
authors.affiliation: Department of Palliative Medicine, University Hospital of Cologne, Cologne, Germany; Center of Integrated Oncology (CIO) Cologne/Bonn, University Hospital of Cologne, Cologne, Germany.
authors.forename: Raymond
authors.initials: R
authors.lastname: Voltz
authors.affiliation: 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.
authors.forename: Claudia
authors.initials: C
authors.lastname: Bausewein
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D004417:Dyspnea / Q000209:etiology / Q000503:physiopathology / Q000628:therapy*; D005260:Female; D006333:Heart Failure / Q000150:complications / Q000503:physiopathology / Q000628:therapy; D006801:Humans; D007407:Interviews as Topic; D017567:Karnofsky Performance Status; D008175:Lung Neoplasms / Q000150:complications / Q000503:physiopathology / Q000628:therapy; D008297:Male; D008875:Middle Aged; D016472:Motor Neuron Disease / Q000150:complications / Q000503:physiopathology / Q000628:therapy; D029424:Pulmonary Disease, Chronic Obstructive / Q000150:complications / Q000503:physiopathology / Q000628:therapy; D036301:Qualitative Research; D000073278:Self-Management
keywords: Coping; dyspnea; episodic breathlessness; palliative care; respiratory symptoms; self-management