Methods: a controlled before and after intervention (YoDDA) design, and a randomised controlled trial design evaluating YoDDA and YoDDA plus a value clarification task. Patients receiving pre-dialysis education in 6 renal units across Yorkshire (UK) participated, completing a consent form (C), and a questionnaire at time of education (T1) and one-month later (T2). In the after phase, predialysis education nurses chose to disseminate YoDDA in different ways: a resource for patients to read in their own time or to be used within the predialysis education consultation with the nurse.
Results: 58% (range 32-97%) of invited patients participated, n=145 (before) and 127 (after); questionnaire response rates were 69% (T1) and 57% (T2). Sample characteristics were: age = 63 years (19-93); 66% male; 69% married; 43% no formal education/ qualification. Dialysis preference was 48% centre haemodialysis, 27% automated peritoneal dialysis, 15% home haemodialysis, 10% continuous ambulatory peritoneal dialysis; patients’ decisional conflict was low enough to implement the decision (<20, Decisional Conflict Scale).
97% participants read YoDDA, 66% more than once, and 72% showed YoDDA to someone else. Free text comments were positive (e.g. “useful, factual, neutral”) with suggestions for improvement (e.g. “page of FAQs”). YoDDA was rated as easy to understand, increased understanding of CKD and dialysis, helped them think about the decision, feel more in control of the decision and wanted to share the decision with family (all rated as around 5, 0-6 scale; before ratings were around 4 on the 0-6 scale). At T2, 4% of YoDDA participants had not started thinking about, 26% were thinking, and 70% had made, their decision; before participants equivalent ratings were 13%, 21% and 66%. Most patients did not think it was important to know another patient’s choice (around 2, 0-6 scale). Both YoDDA versions showed the same pattern of findings.
Conclusions: YoDDA was acceptable to patients and supported their understanding of kidney disease, dialysis and decision making, over and above usual care. YoDDA can be integrated into practice as supplementary information for patients to review on their own or to help facilitate nurse-patient consultations.