BMJ Publishing Group, BMJ Open, 5(11), p. e050149, 2021
DOI: 10.1136/bmjopen-2021-050149
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ObjectivesThis study aimed to explore the degree to which non-pharmacological strategies for chronic breathlessness are sustained 6 months after completing a breathlessness service in patients with chronic obstructive pulmonary disease (COPD), and patient perceptions regarding the need for ongoing support.DesignA qualitative approach was taken using semistructured telephone interviews. Thematic analysis used an integrative approach.SettingThe Westmead Breathlessness Service (WBS) trains patients with COPD to self-manage chronic breathlessness over an 8-week programme with multidisciplinary input and home visits.ParticipantsPatients with moderate to very severe COPD who had completed the WBS programme 6 months earlier.ResultsThirty-two participants were interviewed. One or more breathlessness self-management strategies were sustained by most participants, including breathing techniques (n=22; 69%), the hand-held fan (n=17; 53%), planning/pacing and exercise (n=14 for each; 44%) and strategic use of a four-wheeled walker (n=8; 25%). However, almost a third of participants appeared to be struggling psychologically, including some who had refused psychological intervention. A ‘chaos narrative’ appeared to be prevalent, and many participants had poor recall of the programme.ConclusionsSelf-management strategies taught by breathlessness services to patients with moderate to very severe COPD have potential to be sustained 6 months later. However, psychological coping may be more challenging to maintain. Research is needed on ways to improve resilience to set-backs and uptake of psychological interventions, as well as to understand and address the implications of poor recall for self-management.Trial registration numberACTRN12617000499381