NHS BLOOD AND TRANSPLANT I NEED A KIDNEY TRANSPLANT BUT MY LIVING DONOR IS NOT COMPATIBLE WITH ME. WHAT ARE MY CHANCES IN THE PAIRED DONATION SCHEME? INTRODUCTION People who need a kidney transplant may receive a kidney from a living or deceased donor. Some people may have a family member or close friend who wishes to be a donor but the kidney is not suitable for the intended recipient because the blood groups or HLA types (tissue type) are not compatible. The Paired Donation scheme is part of the National Living Donor Kidney Sharing Schemes (NLDKSS) and was originally set up to allow incompatible donor and recipient pairs the opportunity to ‘swap’ kidneys with other pairs. Patients may now also choose to enter the scheme if they have a compatible donor but wish to see if it is possible to be matched with another donor who is a closer age or HLA match. Because the system depends on the availability of other suitable pairs in the scheme at the same time, it is difficult for patients and transplant teams to know how likely it is that they will get a transplant through the scheme. This tool was developed to give patients who are thinking about entering the scheme an estimate of how long they can expect to wait for a transplant. It is tailored to the characteristics of both the donor and the recipient and also gives an estimate of the likely waiting time for a deceased donor kidney transplant. The tool is designed to be used with the advice and help from your Transplant Unit Coordinator, Nurse or Doctor and we advise that you discuss it with them and use it together to help you decide what suits you best. It can be found at http://www.odt.nhs.uk/transplantation/guidance-policies/tools/. . More technical details are given in the end section ‘Further information’. 1 of 7 HOW TO USE THE TOOL Once opened, the screen should look this Opening screen shot On the left hand side of the screen you will see a number of drop-down boxes. A selection must be made in each box before the results will be shown. You may not know all the details required which is why we strongly suggest that you use this with your Transplant Unit Coordinator, Nurse or Doctor who can give you the necessary information as well as help you decide what is the best option for you. INTERPRETING THE RESULTS The tool shows the estimated chance of a transplant for 3 different scenarios: a transplant from a deceased donor, a transplant through the paired donation scheme and a living donor transplant that is ABO (blood group) or HLA incompatible. The transplant survival figure gives an estimate of the likelihood of the graft still working at 6 months, 1 and 3 years after the operation. 2 of 7 An example An example of how the results are presented is shown below. We have entered the details of the recipient and these are shown in the box in the upper left corner of the screen. Example results Estimated Chance of Transplant: The chances of a transplant are shown as a percentage. So, in the Table of the estimated Chance of a Transplant, we would estimate that between 11 and 20 of 100 people with these characteristics of the patient would receive a transplant from a deceased donor within one year of listing. For 100 donor-recipient pairs with the given characteristics, between 61 and 70 would be transplanted within a year through the paired donation scheme. Figures are also given for 6 months and 3 years. In this example we also see that the indication of ‘Low Titre’ in the ABOi TX (blood group incompatible transplant) variable means that a blood group incompatible transplant is likely to be possible. Waiting times are not given in this case as the time to transplant involves the (short) work up time to transplant only. 3 of 7 Transplant Survival Rates Again, results are given as a percentage so a figure of 91% means that in 91 cases out of 100 people with these recipient characteristics who have received a deceased donor kidney, will have a graft that is working well one year after the transplant. The table also shows that the number of working kidney transplants from a living donor transplant is about 96% and for an ABO incompatible transplant 92%. In this example, no data are given for HLA incompatible transplant as that information is not relevant for this pair. NHS Blood and Transplant 2015 4 of 7 FURTHER INFORMATION The Incompatible Pairs Living Donor Kidney Application was developed by the Department of Statistics and Clinical Studies in Microsoft (MS) Excel Professional Edition (2010). To use the software MS Excel 2003 or later versions will be required although there may be other conversion software available capable of running this program. Macros and security settings: On opening the software in MS Excel, and depending on your security settings, you may be prompted to “Enable Macros” or you may be presented with a warning message that alerts you to the fact that the software has embedded macros. If you do not choose to enable or accept macros then it will not be possible to use this software. If security settings are set at ‘High’ the software can still be used but you may not be able to make use of the ‘Reset’ button embedded within the software. DEFINITION OF INFORMATION REQUIRED Recipient Blood Group: O, A, B or AB. Calculated Reaction Frequency: Defined as the proportion of 10000 blood group compatible UK donors against which the recipient has HLA specific antibodies. Standardised calculated reaction frequency (%), defined in 3 groups: 0-84, 85-94 and 95-100. Donor Blood Group: O, A, B or AB. ABOi Transplant with willing Donor: The clinician should decide whether, based on ABO titre levels, the pair could proceed with an ABO incompatible transplant in line with the practices at that centre. Selecting ‘Low Titre’ will indicate that such a transplant is likely to be able to proceed. Selecting ‘High Titre’ will indicate that this is not likely to be possible and therefore relevant transplant survival information will not be given. This field is only relevant when the nature of the incompatibility of the pair 5 of 7 is blood group incompatibility and there is a ‘Not Applicable’ option that can be selected if this is not the case. HLAi Transplant with willing Donor: The clinician should decide whether, based on HLA antibody levels, the pair could proceed with a HLA incompatible transplant in line with the practices at that centre. Selecting ‘Low DSA’ will indicate that such a transplant is likely to be able to proceed. Selecting ‘High DSA’ will indicate that this is not likely to be possible and therefore relevant transplant survival information will not be given. This field is only relevant when the nature of the incompatibility of the pair is HLA incompatibility and there is a ‘Not Applicable’ option that can be selected if this is not the case. Recipient Age: Current recipient age (years), split into 5 groups: 18-30, 31-40, 4150, 51-60, 61+. 6 of 7 Statistical Methodology for Chances of Transplant and Transplant Survival Rate Estimation Computing estimated chance of transplant For the deceased donor waiting list, waiting times were calculated using existing data from the national transplant database. Patients were selected that had characteristics that were similar to those who have entered the National Living Donor Kidney Sharing Scheme (NLDKSS). This gave us waiting times from the deceased donor waiting list for a cohort similar to patients in the NLDKSS. This similarity was based on variables that are relevant in the NLDKSS. These are blood group, calculated reaction frequency and age. Cox proportional hazards models were then used to give survival curves that can be interpreted as chance of transplant. To estimate waiting time to transplant in the NLDKSS, simulations were used. The simulations were performed in order to obtain more data than are currently available as the scheme has only been in its current form since 2012. Data from pairs and altruistic donors that have entered the scheme were selected randomly with replacement to join the simulated scheme. Matching runs were performed that simulated 3 years in the scheme, and this was repeated 10 times. Pairs could drop out of the scheme with a fixed probability, and potential transplants could fall through with a fixed probability that was based on the proportion of those that fell through in the scheme. Registration time before first matching run and time to transplant after identification of a potential transplant were selected at random from real data. Cox proportional hazards models were then used to estimate time to transplant. Computing transplant survival rates A Cox proportional hazards model was used to determine the probability of transplant survival for each patient based on their individual risk factor values. The estimates were derived using data from the national transplant database. Transplant survival looks at the survival of the graft and the patient until either graft failure or death. Observations are censored if the graft is functioning and the patient is alive at the last time point. The factors included in this model were recipient age group and transplant type (deceased compatible, living compatible, living blood group incompatible and living tissue type incompatible). 7 of 7