Background: The dialysis decision aid booklet.

The Dialysis Decision Aid Booklet developed by the Yorkshire Dialysis Decision Aid team can be downloaded or ordered from Kidney Research UK. In 2014, it was Highly Commended by the British Medical Association Patient Information Awards, and endorsed by the European Renal Best Practice Association for services to use with patients making dialysis decisions.

We found the decision aid was acceptable to staff and patients. The two studies were: a controlled trial with two groups, where patients with progressive kidney disease received either predialysis care (March-Aug 2012) or predialysis care plus the Yorkshire Dialysis Decision Aid booklet (Sept 2012-March 2013); an on-line, randomised controlled trial where any patient with kidney disease, or carer, or health professional could take part (2013-2014).

Patients who got the booklet read it, with most reading it more than once. About three-quarters of patients shared it with family members. Patients liked having information about kidney disease, dialysis and decision making in one place. YoDDA-web was less used by patients and staff, but had a wider reach. Typical comments were:

‘For me, personally, I’d have to give it ten out of ten. It’s answered a lot of me questions…there’s lots of things that it’s told me there that I think I’ve put it down just to be me, and it isn’t, it’s part of the illness.’ (predialysis patient)

‘There’s a lot of information... that’s a good thing because you want a lot of information. You don’t want to be making decisions about important things in your life based on a paragraph in a book’ (predialysis patient)

‘It's really good quality. I like [the] amount of information ... about pretty much every eventuality, which is good... Very readable and straight-forward’ (transplant patient)

‘I am the Lead nurse for the CKD service. I have shown this aid to our wider renal multi professional team and the chairman of our KPA and everyone agrees that we would very much like to use this with our patients. It is an extremely comprehensive and informative aid and initial patient feedback endorses this’ (Lead CKD Nurse)

‘In short, I (and my colleagues) really like it. It is clear, tidy, well presented and, most importantly, informative’ (Consultant Nephrologist)

‘An excellent resource for renal patients and their carers and families’ (Predialysis Nurse Specialist).