Oral Presentation Palliative Care Nurses Australia Conference 2020

The experience of patients with moderate to very severe chronic obstructive pulmonary disease (COPD) attending a breathlessness service: results from the qualitative sub-study of a randomised controlled trial (70352)

Tim Luckett 1 , Mary M Roberts 2 3 4 , Tracy Smith 4 5 , Vinita Swami 5 , Jin-Gun Cho 3 4 5 , John R Wheatley 3 4 5
  1. Faculty of Health, Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), University of Technology Sydney (UTS), Sydney, NSW, Australia
  2. Department of Respiratory and Sleep Medicine, Westmead Hospital, Westmead, NSW, Australia
  3. Ludwig Engel Centre for Respiratory Research, Westmead Institute for Medical Research, Westmead, NSW, Australia
  4. The University of Sydney at Westmead Hospital, Westmead, NSW, Australia
  5. Department of Respiratory and Sleep Medicine, Westmead Hospital, Sydney, NSW, Australia


Chronic breathlessness is a common debilitating symptom across many life-limiting conditions, including chronic obstructive pulmonary disease (COPD).

The Westmead Breathlessness Service (WBS) is based on similar services developed in the UK, and comprises a weekly multidisciplinary outpatient clinic that teaches patients non-pharmacological strategies for self-managing breathlessness over an 8-week program, with a focus on people with moderate to very severe COPD.


To inform understanding of how to optimise patient-perceived benefit from WBS


A qualitative approach was used with a phenomenological orientation. Participants were consecutive patients attending the WBS and enrolled in a randomised controlled trial. A semi-structured telephone interview was conducted following completion of the WBS’s program. Questions focused on perceived benefits and ways of improving the service. Two researchers independently reviewed each interview transcript and applied a global rating scale of ‘significant’, ‘some’ or ‘no’ impact from the service. Thematic analysis used an integrative approach with both deductive and inductive coding, conducted from both ‘insider’ and ‘outsider’ perspectives.


Forty-one participants were interviewed. Eighteen (44%) participants were globally rated as reporting ‘significant’ impact from WBS, 17 (41%) ‘some’ impact, and two (5%) ‘no’ impact; four (10%) could not be rated with confidence. Improvements to breathlessness were generally in the affective and impact dimensions. Some participants attributed improvements to increased self-esteem, confidence and motivation. Benefits of this kind were generally attributed to one-to-one coaching from the multi-disciplinary team, especially through home visits. However, three participants perceived the service to be unnecessarily repetitive and intensive.

Discussion/Implications for practice

This study supports previous research in suggesting that 80-90% of patients report benefit from attending a breathlessness service. It adds that there may be different sub-groups with regard to mechanisms of benefit and, consequently, need for various program contents.


Further research is needed to inform tailoring of breathlessness services as a ‘complex intervention’ (as defined by the UK Medical Research Council) to different patient sub-groups. Evidence on cost-effectiveness is required and is among the foci of the current WBS trial.