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Are within-person Numerical Rating Scale (NRS) ratings of breathlessness 'on average' valid in advanced disease for patients and for patients' informal carers?

Published version
Peer-reviewed

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Authors

Wade, Joshua 
Mendonca, Silvia 
Booth, Sara 
Ewing, Gail 
Gardener, A Carole 

Abstract

INTRODUCTION: The Numerical Rating Scale (NRS) is frequently used to assess patient-reported breathlessness in both a research and clinical context. A subgroup of patients report average breathlessness as worse than their worst breathlessness in the last 24 hours (paradoxical average). The Peak/End rule describes how the most extreme and current breathlessness influence reported average. This study seeks to highlight the existence of a subpopulation who give 'paradoxical averages using the NRS, to characterise this group and to investigate the explanatory relevance of the 'Peak/End' rule. METHODS: Data were collected within mixed method face-to-face interviews for three studies: the Living with Breathlessness Study and the two subprotocols of the Breathlessness Intervention Service phase III randomised controlled trial. Key variables from the three datasets were pooled (n=561), and cases where participants reported a paradoxical average (n=45) were identified. These were compared with non-cases and interview transcripts interrogated. NRS ratings of average breathlessness were assessed for fit to Peak/End rule. RESULTS: Patients in the paradoxical average group had higher Chronic Respiratory Questionnaire physical domain scores on average p=0.042). Peak/End rule analysis showed high positive correlation (Spearman's rho=0.756, p<0.001). CONCLUSIONS: The NRS requires further standardisation with reporting of question order and construction of scale used to enable informed interpretation. The application of the Peak/End rule demonstrates fallibility of NRS-Average as a construct as it is affected by current breathlessness. Measurement of breathlessness is important for both clinical management and research, but standardisation and transparency are required for meaningful results.

Description

Keywords

emphysema, lung cancer, palliative care, perception of asthma/breathlessness, respiratory measurement

Journal Title

BMJ Open Respir Res

Conference Name

Journal ISSN

2052-4439
2052-4439

Volume Title

4

Publisher

BMJ
Sponsorship
Macmillan Cancer Support (unknown)
Marie Curie Cancer Care (None)
Cambridge University Hospitals NHS Foundation Trust (CUH) (PB-PG-0107-11134)
National Institute for Health Research (NIHR) via Comprehensive Local Research Network (CLRN) (unknown)
TCC (None)