Information needs in vascular access decision-making: a qualitative study of patient and clinical stakeholder perspectives

Background: The information and decision support needs required to embed a patient-centred strategy are challenging, as several haemodialysis vascular access strategies are possible with significant differences in short- and long-term outcomes of potential treatment options. We aimed to explore and describe stakeholder perspectives on information needs when making decisions about vascular access (VA) for haemodialysis. Methods: We performed thematic analysis of seven (six online, one in person) focus group discussions including transcripts, post-it phrases and text responses with 14 patients and 12 vascular access professionals (four nephrologists, three surgeons and five nurses – Vascular access nurse specialists/Education and dialysis nurses) who participated in at total of six online and one in person focus group. Results: All patients had experience of haemodialysis and 50% had experience with at least one other modality of RRT. Ten patients had experience of more than one VA modality and 4/14 had experience of AVG, 13/14 had experience of AVF and 8/14 had experience of TCVC. We identified four semantic themes and two latent themes. The themes and their subthemes reflected information needs of patients when making vascular access decisions: Knowledge, Risks and Benefits of Relevant options, long-term treatment strategy and Personal Impact of VA. The latent themes, identified across all stakeholders, were of the need for consistent and trustworthy information. Discussion: All recent vascular access guidelines propose a shared decision-making approach to vascular access. The ability to implement this in practice carries an information need for both patients and clinicians. This study describes a framework model which can be applied during co-design and assessment of vascular access educational resources to facilitate a patient centred perspective.