Introduction Most elderly people with chronic kidney disease must decide on having dialysis or conservative kidney management. It is challenging to know how to present the options in a balanced way for people making such decision at the start of these management pathways. The aim of this study was to develop and test a shared decision making intervention involving patients, relatives and clinicians in the decision on dialysis or conservative kidney management.

Methods A user-design framework¹ for developing and testing patient decision aids guided by International Patient Decision Aid Standards

An iterative process working with patients, relatives and clinicians from eight hospitals in Denmark and international experts

Content informed by systematic review² and patient decision aids³: ‘Living well with kidney disease’⁴ and ‘Dialysis choice’⁵

Evaluated using the SHARED questionnaire,⁶ interviews and focus group

Results The intervention, named ‘Choosing treatment’ was developed over five iterations with three components: 1) training of clinicians, 2) conversation between patient, relatives and clinicians, 3) a patient decision aid. The decision aid meets 21/24 IPDAS criteria, and a readability score equal to magazines. The SHARED showed that patients experienced the interventions as shared decision making, this was confirmed by patients and relatives in the interviews. About 50% chose conservative kidney management.

Discussion Especially the picture grams showing symptoms of kidney failure and quality of life for elderly people involved patients and relatives in the decision making process together with a decision map.

Conclusion We developed a shared decision making intervention acceptable for patients, relatives and clinicians for use within kidney services and implemented at eight hospitals in Denmark.

References

1. Witteman HO, Maki KG, Vaisson G, Finderup J, Lewis KB, Dahl Steffensen K, Beaudoin C, Comeau S, Volk RJ. Systematic development of patient decision aids: an update from the IPDAS collaboration. Med Decis Making. 2021 Oct;41(7):736–754.

2. Buur LE, Madsen JK, Eidemak I, Krarup E, Lauridsen TG, Taasti LH, Finderup J. Does conservative kidney management offer a quantity or quality of life benefit compared to dialysis? A systematic review. BMC Nephrol. 2021 Sep 11;22(1):307.

3. Winterbottom AE, Mooney A, Russon L, Hipkiss V, Ziegler L, Williams R, Finderup J, Bekker HL. Kidney disease pathways, options and decisions: an environmental scan of international patient decision aids. Nephrol Dial Transplant. 2020 Dec 4;35(12):2072–2082.

4. Bekker HL, Winterbottom A, Gavaruzzi T, et al. The dialysis decision aid booklet: making the right choices for you. Peterborough: Kidney Research UK, September 2020. [29/12/2023] https://kidneyresearchuk.org/wp-content/uploads/2019/05/KR-decision-Aid-DOWNLOAD.pdf

5. Finderup J, Dam Jensen J, Lomborg K, Dialysis Choice. Aarhus, Denmark: Aarhus University Hospital, June 2020. [29/12/2023] https://e-dok.rm.dk/edok/editor/AAUHNY.nsf/vLookupUpload/ATTACH-RMAP-BT4EF6/$FILE/Dialysis%20Choice%2027082020.pdf

6. Bekker H, Légaré F, Nye A, Walker W. SHARED - a patient experience of shared decision making questionnaire 2012 [29/12/2023]. Available from: https://eprints.whiterose.ac.uk/182477/.