Patient information about living donor kidney transplantation across UK renal units: A critical review

Abstract

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.

Decisional Needs of People From Minority Ethnic Groups Around Living Donor Kidney Transplantation: A UK Healthcare Professionals’ Perspective

“…Written patient information is commonly used by HCPs to supplement discussions and support shared decision-making [ 20 ]. There is considerable variation in its quality [ 20 , 21 ] and HCPs in our study expressed the view that this information is not suitable for non-English speakers and people with low health literacy, who are often from minority ethnic groups [ 21 ]. Signposting people to resources produced in alternative and multi-lingual formats, use of interpreters or bilingual staff may address these language and health literacy needs [ 54 , 61 ].…”

“…2) Patient leaflets are most used to support face to face discussions within consultations. Quality assessments of this information suggests that it is presented in a way that is difficult to understand, does not signpost to cultural/ religious relevant information and focusses more on preparation for surgery and treatment and/or service information that is not relevant to decision making [20][21][22]. 3) People with AKD seeking LDKT take an active role in seeking and approaching potential donors.…”

Decision aids to assist patients and professionals in choosing the right treatment for kidney failure

“…Once the decision problem is defined, the PtDA has a purpose, for example, to support decision making between (i) conservative care and dialysis pathways, (ii) dialysis options, (iii) switching or stopping dialysis options, (iv) dialysis and transplant pathways, (v) living or deceased donor transplant options and (vi) kidney disease treatment and EoLC options. The PtDA can be populated with accurate information presented in a way that minimizes the cognitive effort needed to process details, reduces bias, boosts active thinking, encourages people to consider what is important to them and prepares them to discuss their reasoning with family and kidney professionals [ 1 , 2 , 34 , 35 , 74–78 ].…”