Title: Unspecified living kidney donation in the UK: barriers to implementation and delivery
Funder: Department of Health and Social Care

Abstract: Background: As of May 2014, 7332 people are on the waiting list for a kidney transplant. Of the 60 unspecified altruistic donors in 2012, 45% came from just three transplant centres, highlighting a notable national variation in practice, and even in the largest centre, of 149 referrals only 27 have donated. Practice variation could be the result of differing attitudes regarding unspecified altruistic donation (UKD) and concerns regarding the physical and psychological impact of donation. Economic barriers to donation are also likely contributors to these practice patterns. However, no evaluation of the UK unspecified altruistic programme has been conducted. Aims & Objectives: This research project will assess the implementation of the UK unspecified donor programme to determine whether there are systematic, attitudinal or economic barriers to donation. The specific research questions addressed are: RQ1. Is there variation in transplant professionals' practice and attitudes, which is preventing some unspecified donations? RQ2. Are psychosocial and physical outcomes after unspecified donation equivalent to those after specified donation? RQ3. What is the economic benefit from unspecified donation? Methods: The research project involves three interlinked studies delivered over five years. Mixed-methods study. Semi-structured qualitative interviews will be undertaken with 60 transplant professionals (surgeons, physicians, psychologists and co-ordinators sampled from two high and two low volume UKD centres). The interviews will identify the attitudes and experiences relating to the UKD process (RQ1). A questionnaire survey of all transplant professionals in the UK involved in UKD will be undertaken to ascertain individual and centre level factors that act as barriers (or facilitators) to donation (RQ1). Prospective cohort study. Individuals presenting to transplant teams in the UK for unspecified donation over a 3 year period will be recruited. Based on historic trends we expect to recruit 780 individuals, of which 224 will proceed to donation. Data regarding physical, psychological, and resource use variables will be collected at baseline. Follow-up data will be collected pre-operatively, at 3 and at 12 months post-donation, for those that proceed to donation. Variation in donation rates between centres will be examined (RQ1). Linking person and centre-level data it will be possible to confirm whether factors identified in the interviews are associated with an increased likelihood of proceeding to donation (RQ1), or associated with psychological well-being at 12 months post-donation (RQ2). A control group of 200 specified kidney donors will be recruited. Comparable data to the UKD cohort will be collected pre-operatively, and at 3 and 12 months post-donation. Differences in physical and psychological variables between the UKD and SKD groups at 3 and 12 months post donation will be estimated (RQ2).45 UKD donors who donated or who withdrew will undergo semi-structured interviews (RQ1). Economic study. Health service use data will be collected from donors and costs calculated. The wider societal costs will also be estimated. Using modelling we will examine the longer-term cost-effectiveness of unspecified donation (RQ3). Outputs: As part of the dissemination of the findings, evidence-based guidelines, for use by transplant teams and commissioners, will be produced in collaboration with key stakeholders.

Lay abstract: The waiting list for a kidney transplant in the UK includes over 7000 people, and is increasing. The best available treatment for kidney failure is a kidney transplant from a living donor. The donor is usually a friend or relative. In 2006 donation to a stranger (referred to as unspecified altruistic donation) was introduced in the UK. Since then the number of unspecified altruistic donations has increased year on year. In 2012, 60 transplants used kidneys from unspecified altruistic donors, accounting for around 1 in 20 of all kidney transplants from living donors. These donations provide a high quality kidney to patients on the national transplant list and to someone in the paired/pooled scheme who would not otherwise obtain a transplant due to incompatibility with their donor. The number of unspecified altruistic donations varies widely across transplant centres. In 2012, three (out of a total of 23) centres accounted for 45% of all unspecified altruistic donations. There is considerable variation between centres in the proportion of people making contact in order to donate a kidney, who actually proceed to donation. Reasons for this variation are unknown but may include resource issues, concerns regarding an individual's motivations, or that the individual may develop physical or psychological issues after donation. The aim of this project is to perform a comprehensive assessment of the unspecified altruistic donor programme in the UK to explore variation between centres, and identify barriers and facilitators to donation for those that have expressed a willingness to do so. It will also examine long-term psychological and physical outcomes following unspecified altruistic donation, and determine whether they are comparable to those who donate a kidney to a relative or friend. These questions will be addressed by interviews and questionnaires sent to health professionals working in transplant centres in the UK, and a study that will follow people who express a willingness to donate a kidney from their first contact with a transplant centre to one year after donation. In addition, no economic evaluation of unspecified altruistic donation has been performed. An evaluation to determine the value of unspecified altruistic donation will be undertaken. This will help to determine whether increasing resources to support those willing to donate a kidney might reduce costs to the NHS, mainly through reduced need for dialysis.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: RENAL AND UROGENITAL