title: Breathlessness, functional status, distress, and palliative care needs over time in patients with advanced chronic obstructive pulmonary disease or lung cancer: a cohort study.
abstract: BACKGROUND
  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.
  
  
  OBJECTIVE
  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).
  
  
  CONCLUSIONS
  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.
authors.affiliation: 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.
authors.forename: Vera
authors.initials: V
authors.lastname: Weingaertner
authors.affiliation: Institute of Palliative Care (BMBF 16KT0951), Oldenburg, Germany.
authors.forename: Christine
authors.initials: C
authors.lastname: Scheve
authors.affiliation: Institute of Palliative Care (BMBF 16KT0951), Oldenburg, Germany.
authors.forename: Verena
authors.initials: V
authors.lastname: Gerdes
authors.affiliation: Department of Palliative Medicine, Protestant Hospital Oldenburg, Oldenburg, Germany.
authors.forename: Michael
authors.initials: M
authors.lastname: Schwarz-Eywill
authors.affiliation: Clinic for Internal Medicine, Pius-Hospital Oldenburg, Oldenburg, Germany.
authors.forename: Regina
authors.initials: R
authors.lastname: Prenzel
authors.affiliation: Institute of Palliative Care (BMBF 16KT0951), Oldenburg, Germany; Department for Palliative Medicine, University Hospital Munich, Munich, Germany.
authors.forename: Claudia
authors.initials: C
authors.lastname: Bausewein
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: Department of Palliative Medicine, Clinical Trials Unit (BMBF 01KN1106), and Centre for Integrated Oncology Cologne/Bonn (CIO), University Hospital of Cologne, Germany.
authors.forename: Raymond
authors.initials: R
authors.lastname: Voltz
authors.affiliation: Institute of Medical Statistics, Informatics and Epidemiology, University Hospital of Cologne, Cologne, Germany.
authors.forename: Lena
authors.initials: L
authors.lastname: Herich
authors.affiliation: 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.
authors.forename: Steffen T
authors.initials: ST
authors.lastname: Simon
mesh_terms: D015331:Cohort Studies; D015897:Comorbidity; D004417:Dyspnea / Q000175:diagnosis / Q000453:epidemiology* / Q000628:therapy; D005260:Female; D005858:Germany / Q000453:epidemiology; D006801:Humans; D008137:Longitudinal Studies; D008175:Lung Neoplasms / Q000175:diagnosis / Q000401:mortality* / Q000628:therapy*; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D010166:Palliative Care / Q000706:statistics & numerical data*; D015995:Prevalence; D029424:Pulmonary Disease, Chronic Obstructive; D013315:Stress, Psychological / Q000175:diagnosis / Q000453:epidemiology* / Q000628:therapy; D015996:Survival Rate
keywords: Dyspnea; chronic obstructive pulmonary disease; cohort study; distress; functional status; lung cancer; needs assessment; palliative care