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.