title: Is breathlessness what the professional says it is? Analysis of patient and professionals' assessments from a German nationwide register.
abstract: OBJECTIVE
  Breathlessness is a common and distressing symptom in patients with advanced disease. Patients' self-report is deemed to be the most valid method of symptom assessment. When patients are not capable of self-assessment, professionals' assessment is often used as alternative but evidence on the validity is conflicting. The aim of this study was to compare self- and professionals' assessment of breathlessness regarding presence and severity in patients with advanced disease.
  
  
  METHODS
  Secondary analysis of a cross-sectional, multi-centre and nationwide register (HOspice and Palliative Care Evaluation (HOPE)). Documented inpatients from hospices and palliative care units from 2006 to 2008 who completed the self-assessed MInimal DOcumentation System (MIDOS) were included. Professionals' assessment were based on the integrated symptom and problem checklist (symptom scores, 0-3). Cohen's kappa (κ) was used to estimate the 'level of agreement' (LoA).
  
  
  RESULTS
  Two thousand six hundred twenty-three patients (mean age, 66.9 (SD, 12.8); 54.4% female; median Eastern Cooperative Oncology Group score, 3; 95.9% with malignant disease) were analysed. Prevalence of breathlessness was 53.4% (1,398 patients) by professionals' and 53.1% (1,410 patients) by self-assessment. Presence was correctly evaluated by professionals in 80.9% of cases (sensitivity, 81.8%; specificity, 79.8%). Severity of breathlessness was correctly estimated in 65.7% of cases. LoA was good (κ=0.62) for the evaluation of presence of breathlessness and moderate (κ=0.5) for the estimation of severity. The proportion of over- or underestimated scores was similar.
  
  
  CONCLUSIONS
  If patient's self-rating, the gold standard of symptom assessment, is not possible, professionals' assessment might be a valid alternative, at least for assessing the presence of breathlessness.
authors.affiliation: Institute of Palliative Care (IPAC), Oldenburg, Germany, steffen@steffensimon.de.
authors.forename: Steffen T
authors.initials: ST
authors.lastname: Simon
authors.forename: Nadine
authors.initials: N
authors.lastname: Altfelder
authors.forename: Bernd
authors.initials: B
authors.lastname: Alt-Epping
authors.forename: Claudia
authors.initials: C
authors.lastname: Bausewein
authors.forename: Vera
authors.initials: V
authors.lastname: Weingärtner
authors.forename: Raymond
authors.initials: R
authors.lastname: Voltz
authors.forename: Christoph
authors.initials: C
authors.lastname: Ostgathe
authors.forename: Lukas
authors.initials: L
authors.lastname: Radbruch
authors.forename: Gabriele
authors.initials: G
authors.lastname: Lindena
authors.forename: Friedemann
authors.initials: F
authors.lastname: Nauck
mesh_terms: D000328:Adult; D000368:Aged; D003430:Cross-Sectional Studies; D004417:Dyspnea / Q000145:classification / Q000175:diagnosis* / Q000209:etiology / Q000628:therapy; D005260:Female; D006738:Hospices; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000503:physiopathology* / Q000628:therapy; D010166:Palliative Care; D012042:Registries; D012044:Regression Analysis; D057566:Self Report