Do the Online Materials Provided by United Kingdom Renal Transplant Centres Adequately Answer Questions Asked by Transplant Recipients, Patients on the Transplant Waiting List, Carers and Live Kidney Donors?

Abstract

Kidney Transplant Priority Setting Partnership Working Group. Introduction High quality patient information is important to educate and empower individuals about their treatment. Recently, a Kidney Transplant Priority Setting Partnership (PSP)1 was conducted which involved an open-ended survey available to transplant recipients, patients on the transplant waiting list, carers, live kidney donors and transplant professionals in the United Kingdom (UK). Participants were asked, “What unanswered questions about kidney transplantation and living donation would you like to see answered by research?” with space for up to three questions to be submitted. A number of the questions submitted, particularly by patients, were already answerable by existing literature reflecting a gap in the information provided to patients. The aim of this project was to examine the online patient materials provided by UK renal transplant centres regarding kidney transplantation and donation, and determine whether this information adequately addresses the answerable questions asked during the Kidney Transplant PSP. Methods Forty-eight questions submitted to the Kidney Transplant PSP were deemed by the project steering group to be answered by existing evidence. Online patient materials from 24 UK renal transplant centres, the NHS website and the NHS organ donation register were independently examined by two reviewers between November 2017 and February 2018. Reviewers assessed whether the questions were adequately answered by the online resources. Multifaceted questions could be described as partially answered when parts of the question were adequately answered. Reviewers compared results and resolved any discrepancies via discussion. Results Answerable questions were categorised as relating to pre-operation (14), post-operation (16), living donation (9), drugs and services (6) or the procedure (3). None of the questions were answered by all transplant centres. The two most answered questions were adequately answered by 13 transplant centres and the NHS website and related to pre-operation (How is a recipient found on the kidney transplant database?) and post-operation (What post operation support will I receive?). Six questions about post-operation related to survival rates of a transplanted kidney, such as “Given modern developments in drugs, how long is it expected a transplanted kidney will survive?” or “How many transplants are failures?” and were unanswered by the majority of transplant centres. Fourteen questions were unanswered by all transplant centres, the NHS website and NHS organ donor register. No online materials were located for six transplant centres. Conclusion The online materials provided by UK renal transplant centres did not sufficiently answer the information needs of patients and other participants of the Kidney Transplant PSP. Amending the online materials provided to patients to address these questions, will help patients make informed decisions about their care and disease management. 1. Knight SR, Metcalfe L, O'Donoghue K, Ball ST, Beale A, et al. Defining Priorities for Future Research: Results of the UK Kidney Transplant Priority Setting Partnership. PLoS One. 2016; 11(10): e0162136.