MAKING RESEARCH OUTPUTS ACCESSIBLE TO PEOPLE WITH KIDNEY DISEASE: IMPLEMENTING THE DIALYSIS DECISION AID BOOKLET

Purpose: To assess the impact of implementation activities on decision aid use by people making dialysis decisions. The Dialysis Decision Aid booklet was launched by a UK kidney disease charity when the research assessing its acceptability to patients with established kidney disease and predialysis services ended.

Method(s): observational study tracking use of decision aid by stakeholders. From September 2014, the researchers and charity team carried out activities known to lower barriers and facilitate use of patient decision aids. The decision aid’s use was monitored. Activities focused on a) raising awareness of the resource across stakeholder groups (e.g. distribution to clinical directors, at conferences and staff training), b) enabling accessibility (e.g. open-access on-line, post and via services; free), c) ensuring acceptability to service providers and users (e.g. research findings), d) encouraging motivation to use a decision aid (e.g. endorsement by professional organisations).

Result(s): during its first year (2015), the booklet was endorsed best practice for predialysis education by four medical professional organisations, two UK and two international; it was translated by one professional organisation for use in Spain, and one patient organisation for use in Italy; 350 booklets were requested directly by staff, carers and patients, and 450 downloaded via web-pages in the UK; nine UK renal units bulk ordered copies for their usual predialysis education resources; the paper describing its development and acceptability to staff and patients was accepted for publication in a peer-reviewed journal. Staff and patients using the decision aid comment it provides a “particularly patient friendly”, well written, accurate, balanced and comprehensive resource supporting peoples’ treatment decision making within, and/or independently of, predialysis programmes.

Conclusion(s): people accessing this decision aid find it enables them to think differently about dialysis treatment decisions in the context of their life, or that of their patient. It meets clinical guidelines enabling staff to support patients making informed decisions between dialysis options. However, there is practice variation in its adoption across services in the UK. This observational method is not able to capture data from those staff and patients who do not use an evidence-based, decision aid. There is a need for further research evaluating variations in use and its impact on both care quality and service outcomes.