How early patient and clinician consultation reshaped a palliative care research programme for chronic limb-threatening ischaemia: a case study

AbstractBackground: There is no established palliative care pathway for people with advanced chronic limb-threatening ischaemia (CLTI) in the UK. Before defining research questions or methods, we undertook early patient and clinician consultation within the developing Patient and Public Involvement and Engagement (PPIE) process to assess whether this was a worthwhile research area and, if so, how it should be framed and designed. We use purpose-forming consultation to describe this preparatory stage, undertaken while the value, focus and intended direction of the programme remained open to change. This case study maps contributor advice to subsequent research-team decisions.Methods: We held three consultation episodes with eight patient contributors with peripheral arterial disease or CLTI and three vascular nursing contributors. Each conversation followed a six-domain planning framework addressing relevance, language, outcomes, participation barriers, family inclusion and continuing involvement. Contributors advised on these domains; formal responsibility for programme decisions remained with the research team.Results: Contributors supported the relevance of the proposed research area and challenged the team's initial assumption that palliative care would follow the end of vascular intervention. The research team consequently reframed the programme towards investigating anticipatory, parallel palliative support integrated with vascular care. Advice also informed questions about language, outcomes, family involvement, accessible participation and continuing involvement. These contributions informed, rather than determined, the future objectives, sampling, participation arrangements and governance.Conclusions: Purpose-forming consultation can expose assumptions before a research programme is fixed. In this case, it informed the programme's conceptual focus, methods and planned governance. A formal Advisory Group will provide a more collaborative structure during the next stage.