Introduction

Breathlessness is a common symptom in clinical practice. Prior qualitative studies have found that patients were provided with limited self-management resources.

Aim

To explore the views of patients with chronic breathlessness and their carers on existing breathlessness patient education materials (PEMs) to develop one that fits the Australian context.

Methods

Participants were presented excerpts of 3 PEMs from Lung Foundation Australia, European Lung Foundation and Howard et al (NPJ PCRM 2014: 24) that were assessed to be of high quality in our previous systematic review and quality assessment of PEMs for breathlessness (Sunjaya et al, BMC Pulm Med. 2022: 22). They then undergo a Think Aloud process to share their thoughts on the PEMs content and presentation and requested to comment how applicable the resource shared would be to them and propose ideas for improvement.

Results

Fourteen patients (cardiac, respiratory, and non-cardiorespiratory) and two carers were interviewed (50% female, median ±5 years with breathlessness). Participants appreciated the practical breathing techniques and focus on relaxation in the PEMs. Some reported having self-taught the techniques. Many needed to self-taught. Suggestions for improvement ? (1) simpler language (2) simpler layout with concise text (3) include practical FAQs such as ?does a paper bag help with breathlessness? (4) provide advice on attending a breathlessness consult and (5) resources supporting symptom and medication tracking.

Conclusion

Current PEMs for breathlessness provide practical advice applicable to patients but needs to be written in simpler language. They should focus not only on providing support post-consult but also pre-visit.