Researching breathlessness in palliative care: consensus statement of the National Cancer Research Institute Palliative Care Breathlessness Subgroup

Abstract

Breathlessness is common in advanced disease and can have a devastating impact on patients and carers. Research on the management of breathlessness is challenging. There are relatively few studies, and many studies are limited by inadequate power or design. This paper represents a consensus statement of the National Cancer Research Institute Palliative Care Breathlessness Subgroup. The aims of this paper are to facilitate the design of adequately powered multi-centre interventional studies in breathlessness, to suggest a standardised, rational approach to breathlessness research and to aid future 'between study' comparisons. Discussion of the physiology of breathlessness is included.

Therapeutic Bronchoscopy for Malignant Central Airway Obstruction

“…Th is was based on the minimal clinically important diff erence (MCID) of the Borg score, which is a one-unit change. 13,14 Change in utility was calculated as postprocedure 2 preprocedure utility ( ⌬ utility) among patients alive 30 days aft er the procedure. For responder analysis we used a ⌬ utility of 1 0.033 to defi ne patients having a clinically signifi cant improvement in utility.…”

An Official American Thoracic Society Statement: Update on the Mechanisms, Assessment, and Management of Dyspnea

“…Johnson and colleagues categorized measures primarily according to whether they were unidimensional or multidimensional (178). Others have suggested categorizations of intensity or severity, situational or functional impact, effects on health-related quality of life or health status, and qualitative descriptors (179,180).…”

The Evidence Base for Oxygen for Chronic Refractory Breathlessness: Issues, Gaps, and a Future Work Plan

“…This, coupled with the other concept of a "dyspnoea target", which also recognises fear and anxiety as major drivers of breathlessness in subgroups of people, underlines the importance of designing studies with mixed methods. Recent systematic reviews on outcome measurement of breathlessness and a consensus statement both of which call for unidimensional, multidimensional and qualitative assessment of the symptom reflect this stance (66)(67)(68)(69).…”

“…An appreciation of the subtleties of measurement of the sensation of breathlessness has also been important; there appears to be a diurnal variation in the perception of intensity, so assessment of "present" breathlessness in daily measurement needs to be measured twice daily (e.g., on awakening and before going to bed)(20). We have also improved our understanding in how best to use unidimensional measures such as the numerical rating scale, the Borg and the visual analogue scale, choosing with much more care which tool to use for which population, and in what situation (66)(67)(68)(69). Measurement of function is still an important but secondary endpoint.…”