Is breathlessness what the professional says it is? Analysis of patient and professionals' assessments from a German nationwide register

Support Care Cancer. 2014 Jul;22(7):1825-32. doi: 10.1007/s00520-014-2131-5. Epub 2014 Feb 19.


Purpose: 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.

Publication types

  • Multicenter Study
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Aged
  • Cross-Sectional Studies
  • Dyspnea / classification
  • Dyspnea / diagnosis*
  • Dyspnea / etiology
  • Dyspnea / therapy
  • Female
  • Hospices
  • Humans
  • Male
  • Middle Aged
  • Neoplasms / physiopathology*
  • Neoplasms / therapy
  • Palliative Care
  • Registries
  • Regression Analysis
  • Self Report