Non-Pharmacological Breathlessness Action Plans for People with COPD and Their Support People: A Scoping Review and Survey of Current Practice

Introduction: Breathlessness action plans guide people to self-manage acute-on-chronic breathlessness episodes using non-pharmacological strategies to help breathing and overcome panic. We aimed to identify plans available for people with chronic obstructive pulmonary disease (COPD) and describe their development, content, quality, use, and evidence for benefit. Methods: Two descriptive methodologies were used, overseen by a team of people with COPD and carers/support persons, clinicians and researchers: 1) A scoping review (academic databases, internet) identified English-language plans and research; 2) An online survey of plan-users and clinicians about their plan-related experience and perceived benefits. Each plan underwent appraisal by a person with COPD/support person and clinician/researcher using the Patient Education Materials Assessment Tool (PEMAT), content analysis and reading grade assessment. Results: Of 69 plans identified, 88% (n=61/69) included breathing techniques, 78% (n=54/69) positioning, 65% (n=45/69) airflow, 36% (n=25/69) relaxation/distraction, 30% (n=21/69) stopping/slowing, 22% (n=15/69) remaining calm, 13% (n=13/69) reassurance, 7% (n=5/69) support from others and 4% (n=3/69) loosening clothing. The 48 plans that could be PEMAT-analysed scored an average of 64% for understandability and 68% for actionability. Their median reading grade was 8.2 (inter-quartile range 2.2). We identified efficacy support from only one pre/post study and feasibility/acceptability from qualitative data in two feasibility trials, each focusing on a different plan. In the survey, 67% (n=31/46) of plan-users self-reported avoiding calling an ambulance over the past year by using their plan. 93% (n=94/101) of clinicians perceived patient benefit in the form of increased confidence/reduced anxiety, 60% (n=61/101) reduced frequency of episodes, 53% (54/101) reduced need for ambulance/emergency department, and 41% (41/101) increased activities of daily living, while 4% (4/101) were unsure of any benefit. Discussion: Despite multiple plans being available, few studies have assessed acceptability or efficacy. Further research is needed to evaluate net effects on self-management, breathlessness-related outcomes and healthcare usage. Plain Language Summary: Breathlessness action plans are short guides that can help people with chronic obstructive pulmonary disease (COPD) manage episodes of sudden breathlessness. The plans use simple strategies without medications like breathing techniques, positioning, or using a fan. We found 69 plans, but only a few have been properly tested. People using the plans said they could sometimes avoid calling an ambulance. Most clinicians felt the plans gave patients more confidence and reduced anxiety. More research is needed to show how well they work and whether they can reduce the need for emergency care.