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

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Abstract

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.

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Acknowledgments

Many thanks to Gao Wei, statistician at Cicely Saunders Institute at King’s College London, for her statistical support. This study was presented as an oral presentation at the 6th Research Congress of EAPC in 2010 in Glasgow (UK) and as a poster presentation at the 8th German Palliative Care Conference in 2010 in Dresden (Germany) [33, 34].

Funding

The HOspice and Palliative Care Evaluation (HOPE) register is supported by Mundipharma.

Conflict of interest

The authors have no conflicts of interest to declare.

Author information

Authors and Affiliations

  1. Institute of Palliative Care (IPAC), Oldenburg, Germany

    Steffen T. Simon, Nadine Altfelder, Claudia Bausewein & Vera Weingärtner

  2. Department of Palliative Medicine, Clinical Trials Unit (BMBF 01KN1106), and Centre for Integrated Oncology (CIO) Cologne/Bonn, University Hospital of Cologne, Cologne, Germany

    Steffen T. Simon, Vera Weingärtner & Raymond Voltz

  3. Department of Palliative Medicine, University Medical Center Goettingen, Goettingen, Germany

    Bernd Alt-Epping & Friedemann Nauck

  4. Department for Palliative Medicine, University Hospital Munich, Munich, Germany

    Claudia Bausewein

  5. Department of Palliative Care, Policy and Rehabilitation, King’s College London, London, UK

    Claudia Bausewein

  6. Division of Palliative Medicine and Comprehensive Cancer Center CCC Erlangen-EMN, University Hospital Erlangen, Erlangen, Germany

    Christoph Ostgathe

  7. Department of Palliative Medicine, and Malteser Hospital Bonn/Rhein-Sieg, Bonn Palliative Care Centre, University Hospital Bonn, Bonn, Germany

    Lukas Radbruch

  8. Clinical Analysis, Research and Application (CLARA), Kleinmachnow, Germany

    Gabriele Lindena

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  1. Steffen T. Simon
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  10. Friedemann Nauck
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Corresponding author

Correspondence to Steffen T. Simon.

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Simon, S.T., Altfelder, N., Alt-Epping, B. et al. Is breathlessness what the professional says it is? Analysis of patient and professionals’ assessments from a German nationwide register. Support Care Cancer 22, 1825–1832 (2014). https://doi.org/10.1007/s00520-014-2131-5

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  • DOI: https://doi.org/10.1007/s00520-014-2131-5

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