About kidney transplant care in New Zealand

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About kidney transplant care in New Zealand A summary of the 2014 New Zealand Nephrology Activity Report: Kidney transplant care provided in 2014 1

ABOUT THIS REPORT This report is for people who have or are considering a kidney transplant in New Zealand and their families and whānau. The report is also for anyone who is interested in kidney transplant care provided in New Zealand. This report summarises the latest update of nephrology care in New Zealand. We compare the results with previous years and the current national standards. We recommend improvements in care. The full 2014 report on kidney care in New Zealand can be downloaded at www.health.govt.nz/nrabreports. The full 2014 report of the National Renal Transplant Services can be downloaded at www.health.govt.nz/national-renal-transplantservice. This is the first time a summary of these reports has been provided. In the future, we would like to meet and talk to people who have a kidney transplant and their families to ask what information they would like to see in this summary and the best ways to show the information. 2

Where does the information come from for this report? Every year New Zealand patients treated with dialysis or a kidney transplant give information about their treatment to ANZDATA, which is a health database for Australia and New Zealand. ANZDATA and New Zealand kidney teams collect information about: How many people are treated with a kidney transplant in New Zealand. What kidney transplant options are available and provided to New Zealand patients. What kinds of people donate a kidney for transplant? Why is this report important? The reasons why New Zealand kidney teams collect this information is to: Ensure New Zealanders get excellent care Ensure New Zealand kidney teams meet national guidelines Show where kidney transplant care could be improved New Zealand also now has a National Renal Transplant service that aims to increase access to kidney transplantation. This service uses ANZDATA and other sources of information to help find new ways to increase kidney transplants for New Zealand patients 3

How many people donated and received a kidney transplant in 2014? 134 kidney transplants 134 people in New Zealand received a kidney transplant in 2014. Two other people received a kidney combined with a pancreas transplant and two people received a kidney combined with a liver transplant. 72 62 Living Deceased Slightly more people received a kidney transplant from a living donor (for example, from their husband, wife, partner, brother, sister, daughter, son, friend, or a non-directed donation from someone they don t know) than from a person who donated their organs after death (deceased). In 2014, 72 people received a living kidney donation and 62 received a deceased kidney donation. This was the most number of living people donating a kidney in New Zealand in any one year. To give some perspective, about 25 people donated a kidney each year 20 years ago). 4

How many people received a kidney transplant as their first treatment? 24 523 People who need treatment for kidney failure can start treatment with dialysis or sometimes with a kidney transplant. In 2014, 24 people had a kidney transplant as their first treatment for kidney failure while most people (523 people in total) started treatment with dialysis. 23 NZ European /Asian 1 Pacific 0 Māori Among the 24 people who had a kidney transplant instead of dialysis as their first treatment for kidney failure, there was only 1 Pacific patient and no Māori patients in 2014. This is a concern because Māori and Pacific patients are many more times likely to have kidney failure than European and Asian New Zealanders and so new transplants should be much more common rather than much less common for these patients. The reasons for this difference in 5

the chance to have a kidney transplant are not very clear and need to be better understood. Are kidney transplants increasing in New Zealand? 32 26 27 25 27 2010 2011 2012 2013 2014 When everyone in New Zealand is counted, about 25 to 30 kidney transplants are provided for every 1 million New Zealanders. This number has been steady over the last five years, but has increased in 2014 (up to 32). 39 32 The number of kidney transplants done in New Zealand (32 for every million people) is a bit lower than the average number in Australia (39 for every million people). Nephrology services are all working on ways to increase kidney transplants in New Zealand. 6

How many dialysis patients get a transplant? About 5 in every 100 dialysis patients receive a kidney transplant each year. This number doesn t seem to be increasing. How many people live in New Zealand with a kidney transplant? 1628 There were 1628 adults living with a kidney transplant in New Zealand in 2014. This is increasing by about 50 people every year. 7

Children and young adults There were 39 children and young people living with a kidney transplant in New Zealand in 2014. There were 13 new kidney transplants in patients younger than 25 years old. What new ways of kidney transplantation are happening in New Zealand? Previously, patients could only receive a donor kidney that met both blood group and immune checklists. This meant that some healthy people could not donate their kidney to a friend or family member. New research shows that a suitable blood group is now not required. In New Zealand, there are now two new ways to help people donate a kidney to someone these are by kidney exchange or a blood group incompatible transplant. 8

New Zealand kidney exchange program The first new way to have a kidney transplant in some situations is called kidney exchange. This is usually when there are immune barriers between the donor and the recipient. In a kidney exchange, two or more pairs of people (the person receiving a kidney transplant + their donor) exchange or swap with other donor + recipient pairs to help patients who have a healthy donor receive a kidney transplant. There were two kidney exchanges in New Zealand in 2014 giving two people a kidney transplant each (a total of four kidney transplants). 9

ABO incompatible kidney transplant The second way for a person to receive a kidney transplant -- when their blood groups are unsuitable -- is called an ABO incompatible transplant. The person receiving the kidney transplant has extra treatment before the transplant is done to decrease their risk of rejecting the new kidney. 7 transplants A O In 2014, there were 7 ABO incompatible transplants in New Zealand. Five of these were done in Auckland and two were done in Christchurch. 10

Recommendations The findings of the 2014 report highlight where improvement in transplant care might be made. Kidney healthcare services could: Look at reasons for much lower opportunities for Māori and Pacific patients to receive a kidney transplant despite having a much higher rate of kidney failure Identify ways to increase kidney transplantation for all New Zealanders Explore ways to help adults and children receive a transplant as their first treatment for kidney failure Support ways for patients and donors to prepare for a kidney transplant Taking part Improving access Gaining suppor t Working together 11

Explaining words in this report ABO incompatible kidney transplant This is when someone who has a specific blood group donates a kidney to another person who has an unsuitable blood group. Blood group Everyone has a blood group. There are four types of blood group: A, B, AB, and O. The blood group describes a specific protein attached to the red blood cells. These proteins are either A or B. People with an O blood group don t have these proteins on their blood cells. A kidney transplant from a person with blood group A (with an A protein attached to blood cells) to a person with blood group O (with no protein attached to blood cells) will cause a reaction to the new kidney unless the recipient has extra treatment before the kidney transplant. Deceased kidney organ donor Someone who donates a kidney after they have died suddenly. Dialysis Treatment to clean the blood stream in someone with kidney failure. Kidney donor Someone who donates a kidney. 12

Health database A collection of information about the clinical care of dialysis and kidney transplant patients to measure the performance and quality of care Living kidney donor Someone who gives one of their two kidneys to another person who has kidney failure. Kidney failure When the kidney function is very low and toxins and fluid are retained in the body. Kidney exchange This is where people exchange their kidney donation with another pair of healthy kidney donor and their recipient, to help people receive a suitable kidney. Kidney transplant An operation that includes removing a kidney from a donor and inserting the kidney into to someone with kidney failure, to provide kidney function 13

Where to go for more information Kidney Health New Zealand http://www.kidneys.co.nz/ 0800 543 639 National Renal Advisory Board National Renal Transplant Service http://www.health.govt.nz/aboutministry/leadership-ministry/clinicalgroups/national-renal-advisory-board http://www.health.govt.nz/aboutministry/leadership-ministry/clinicalgroups/national-renal-transplant-service Your own dialysis team. We welcome your views on how we can improve this report. Please contact: Suetonia Palmer or Tonya Kara Telephone: 03 3640 655 Email: suetonia.palmer@cdhb.health.nz tonyak@adhb.govt.nz 14