Maintenance of non-pharmacological strategies 6 months after patients with chronic obstructive pulmonary disease (COPD) attend a breathlessness service: a qualitative study

OBJECTIVES: This 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. DESIGN: A qualitative approach was taken using semistructured telephone interviews. Thematic analysis used an integrative approach. SETTING: The Westmead Breathlessness Service (WBS) trains patients with COPD to self-manage chronic breathlessness over an 8-week programme with multidisciplinary input and home visits. PARTICIPANTS: Patients with moderate to very severe COPD who had completed the WBS programme 6 months earlier. RESULTS: Thirty-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. CONCLUSIONS: Self-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 NUMBER: ACTRN12617000499381