Development and refinement of a clinician consultation-aide intervention to support effective chronic breathlessness discussions with patients and their family carers

Background Chronic breathlessness is frightening and disabling. It is common in people with cardio-respiratory and cancer diseases, even after optimum disease treatment. Evidence shows that breathlessness-targeted interventions are effective at helping people self-manage breathlessness, however, in consultations, clinicians do not discuss breathlessness routinely, or if they do, they find it difficult to explain in lay terms and rely instead on medical language of mechanisms and pathology. This means patients and their supporters often assume nothing further can be done so they no longer raise the problem and are unaware of targeted interventions that can help with their breathlessness self-management. We do not know the best way for clinicians to explain what chronic breathlessness is, or which words and phrases are easiest to understand and support self-management; therefore this project will address this gap. Aim To develop and refine a "Pack" (that is, Plain English breathlessness explanations and supporting materials) for UK clinicians to use to explain chronic breathlessness and improve patient and family supporter understanding and management of breathlessness. This will provide the foundation for i) a subsequent feasibility study and ii) a multi-site, Hybrid Type III trial testing effectiveness and implementation. Objectives 1. To develop a prototype Pack for clinicians to use in clinical consultations with patients and their supporters (Work Package [WP] 1). 2. To refine the prototype Pack by linking the findings from recorded clinical consultations and post consultation patient and supporter interviews before and after introduction of the Pack (WP2). Methods WP1: We will create a preliminary Pack by combining materials from our previous work on communicating with people with chronic breathlessness. Through stakeholder co-design groups (workshops Month 2, 3 and 13 with patients, supporters and clinicians) we will refine the preliminary Pack and develop Plain English breathlessness explanations and supporting materials for clinicians, including staff training and resources to support delivery. WP2: Using the refined Pack from WP1, we will conduct i) audio-recorded clinical consultations and ii) interviews with patients and supporters before or after introduction of the Pack. We will conduct discourse analysis of the audio-recorded consultations and thematic analysis of the patient and supporter interviews and use the findings to refine the Pack and supporting materials to produce the first UK version prototype Pack ready for feasibility testing in a future study. Timelines for delivery WP1 and 2 will proceed in parallel, with WP1 (co-design) completed by Month 13 and WP2 (refinement) by Month 12. Outputs will be finalised by Month 18. Anticipated impact and dissemination This study will underpin future definitive research into the effectiveness of the Pack for UK clinicians. We anticipate that better understanding leads to better engagement with self-management techniques, thereby improving the lives of people living with chronic breathlessness. Our dissemination strategy builds on the excellent engagement we have with PPI group members and clinicians who will co-create public facing summary findings for sharing (website, social media, newsletter). We will present and publish in scientific conferences and journals and clinical communications.