Vera Weingaertner1, Christine Scheve2, Verena Gerdes2, Michael Schwarz-Eywill3, Regina Prenzel4, Claudia Bausewein5, Irene J Higginson6, Raymond Voltz7, Lena Herich8, Steffen T Simon9. 1. Department of Palliative Medicine, Clinical Trials Unit (BMBF 01KN1106), and Centre for Integrated Oncology Cologne/Bonn (CIO), University Hospital of Cologne, Germany; Institute of Palliative Care (BMBF 16KT0951), Oldenburg, Germany. 2. Institute of Palliative Care (BMBF 16KT0951), Oldenburg, Germany. 3. Department of Palliative Medicine, Protestant Hospital Oldenburg, Oldenburg, Germany. 4. Clinic for Internal Medicine, Pius-Hospital Oldenburg, Oldenburg, Germany. 5. Institute of Palliative Care (BMBF 16KT0951), Oldenburg, Germany; Department for Palliative Medicine, University Hospital Munich, Munich, 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. 7. Department of Palliative Medicine, Clinical Trials Unit (BMBF 01KN1106), and Centre for Integrated Oncology Cologne/Bonn (CIO), University Hospital of Cologne, Germany. 8. Institute of Medical Statistics, Informatics and Epidemiology, University Hospital of Cologne, Cologne, Germany. 9. Department of Palliative Medicine, Clinical Trials Unit (BMBF 01KN1106), and Centre for Integrated Oncology Cologne/Bonn (CIO), University Hospital of Cologne, Germany; Institute of Palliative Care (BMBF 16KT0951), Oldenburg, Germany. Electronic address: steffen@steffensimon.de.
Abstract
CONTEXT: Breathlessness is a distressing symptom in advanced disease. Understanding its patterns, burden, and palliative care (PC) needs over time is important to improve patients' quality of life. OBJECTIVES: To describe and compare the courses of refractory breathlessness, functional status, distress, and PC needs in patients with advanced chronic obstructive pulmonary disease (COPD) or lung cancer (LC) over time. METHODS: This was a cohort study of patients with COPD (Stage III/IV) or LC. Data were assessed monthly with up to 12 telephone interviews, using the modified Borg Scale, Karnofsky Performance Status Scale, Distress Thermometer, and Palliative care Outcome Scale as outcomes measures. Descriptive analysis compared all outcomes between COPD and LC at baseline and over time (forward from study entry and backward from death). RESULTS: A total of 82 patients (50 COPD and 32 LC), mean (SD) age of 67.2 (7.8), and 36% female were included (8 COPD and 23 LC deceased). The patients with COPD perceived higher levels of breathlessness and distress at lower functional status steadily over time. The LC patients' breathlessness, distress, and PC needs increased, whereas functional status decreased toward death. The PC needs were similar between disease groups. Breathlessness was negatively correlated with functional status (COPD=mean r=-0.20, P=0.012; LC=mean r=-0.277, P=0.029) and positively correlated with PC needs in COPD patients (mean r=0.343, P<0.001). Death was significantly predicted by diagnosis (LC: hazard ratio=7.84, P<0.001) and functional status (10% decline: hazard ratio=1.52, P=0.001). CONCLUSION: The PC needs of patients with advanced COPD are comparable with LC patients, and breathlessness severity and distress are even higher. The care for COPD patients requires further improvement to address symptom burden and PC needs.
CONTEXT: Breathlessness is a distressing symptom in advanced disease. Understanding its patterns, burden, and palliative care (PC) needs over time is important to improve patients' quality of life. OBJECTIVES: To describe and compare the courses of refractory breathlessness, functional status, distress, and PC needs in patients with advanced chronic obstructive pulmonary disease (COPD) or lung cancer (LC) over time. METHODS: This was a cohort study of patients with COPD (Stage III/IV) or LC. Data were assessed monthly with up to 12 telephone interviews, using the modified Borg Scale, Karnofsky Performance Status Scale, Distress Thermometer, and Palliative care Outcome Scale as outcomes measures. Descriptive analysis compared all outcomes between COPD and LC at baseline and over time (forward from study entry and backward from death). RESULTS: A total of 82 patients (50 COPD and 32 LC), mean (SD) age of 67.2 (7.8), and 36% female were included (8 COPD and 23 LC deceased). The patients with COPD perceived higher levels of breathlessness and distress at lower functional status steadily over time. The LC patients' breathlessness, distress, and PC needs increased, whereas functional status decreased toward death. The PC needs were similar between disease groups. Breathlessness was negatively correlated with functional status (COPD=mean r=-0.20, P=0.012; LC=mean r=-0.277, P=0.029) and positively correlated with PC needs in COPDpatients (mean r=0.343, P<0.001). Death was significantly predicted by diagnosis (LC: hazard ratio=7.84, P<0.001) and functional status (10% decline: hazard ratio=1.52, P=0.001). CONCLUSION: The PC needs of patients with advanced COPD are comparable with LC patients, and breathlessness severity and distress are even higher. The care for COPDpatients requires further improvement to address symptom burden and PC needs.
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