Background: Patient information about living donor kidney transplantation is used to supplement conversations between health professionals, people with advanced kidney disease and potential kidney donors. It is not known if the information is designed to support decision-making about renal replacement options and if it helps people discuss living kidney donation with family and friends.
Objective: Critical review of resources used in outpatient kidney consultations to support patients' decision-making about living kidney donor transplantation.
Design: Mixed methods including an audit questionnaire and critical analysis of patient information leaflets.
Participants And Measurements: All kidney transplant centres and renal units in United Kingdom received a questionnaire to elicit by whom, how, and when information about living kidney donation is delivered. Copies of leaflets were requested. A coding frame was utilised to produce a quality score for each leaflet.
Results: Thirty-nine (54%) units participated. Patients discussed living donor kidney transplantation with nephrologists (100%), living donor nurse (94%), transplant co-ordinator (94%), and predialysis nurse (86%). Twenty-three leaflets were provided and reviewed, mean quality scores for inclusion of information known to support shared decision-making was m = 2.82 out of 10 (range = 0-6, SD = 1.53). Readability scores indicated they were 'fairly difficult to read' (M = 56.3, range = 0-100, SD = 9.4). Few included cultural and faith information. Two leaflets were designed to facilitate conversations with others about donation.
Conclusions: Leaflets are unlikely to adequately support decision-making between options and discussions about donation. Services writing and updating patient leaflets may benefit from our six principles to guide their development.
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