Organ Donation and Transplantation in the UK—The Last Decade

SUMMARY Over the decade between 2003 and 2012, the UK has seen major changes in how organ donation and transplantation is delivered. The number of deceased organ donors has increased from 709 (12.0 per million population pmp) to 1,164 (18.3 pmp); this increase has been predominantly a result of an increase in donors after circulatory death (DCD) (from 1.1 pmp to 7.9 pmp) while the numbers of donors after brain death (DBD) has remained broadly stable (around 10.5 pmp). The donor population has become older (from 14% 60 years or over to 35%) and heavier (from 14% with body mass index ≥30 kg/m2 to 23%). Despite these changes in demographic factors, the number of organs retrieved from DBD donors has risen from a mean of 3.6 to 4.0 per donor and for DCD donors from 2.2 to 2.6. The number of transplants in adults in 2012 was 2,709 (967 DBD, 708 DCD, and 1,034 living) for kidney alone, 246 pancreas (including 172 kidney and pancreas), 792 (611 DBD, 142 DCD, 36 living, and 3 domino) for liver, 136 for heart only, and 179 (145 DBD and 34 DCD) for lung only. Median waiting times to transplant for adult patients were 1,167, 339, 141, 293, and 311 days, respectively. The proportion of adult non-urgent registrants in 2009 (2007 for kidneys) who were removed from the waiting list or died awaiting a graft within 1 year was 3% for kidneys, 6% for pancreas, 19% for liver, 27% for heart, and 24% for lung. Outcomes after solid organ transplants are improving; for adult patients grafted between 2003 and 2005, 5-year graft survival for kidney is 84% (DBD), 87% (DCD), and 92% (living donor), for simultaneous kidney and pancreas 72%, and for pancreas alone 50% (DBD). Five-year patient survival for liver is 77% (DBD) and 68% (DCD), heart 67%, and lung 52% (DBD). Although rates of organ donation and transplantation have increased in the UK, this has been almost solely because of a rise in DCD donation. Although donor age and weight is increasing, graft survival has generally improved. Despite a recent fall in the number of patients on the transplant waiting list, there remains a significant gap between the need for transplantation and the number of organs available from deceased and living donors. The implementation of a new strategy following the recommendations of the Organ Donation Task Force in 2008 has had a major impact in bringing together clinicians involved in both organ donation and transplantation, and these changes and clinical enthusiasm have been instrumental in achieving success. With an emphasis on the need to increase the family consent rate for organ donation, which has failed to show any improvement over the last 5 years, a new UK strategy for organ donation and transplantation, introduced in 2013, will further increase organ transplantation in the UK. INTRODUCTION Over the last decade, in the UK, as elsewhere, there have been major advances in supporting solid organ donation and transplantation. Coincidental with the many advances in public health and safety, and the clinical management of both potential and actual donors, management of people with end-stage disease has improved. Developments in organ preservation and retrieval, in surgical and anesthetic management and postoperative care, immunosuppression, and tolerance have all contributed not only to better outcomes but to making transplantation more accessible as surgeons accept older and higher risk recipients and as more contraindications (such as infection with hepatitis B virus or HIV) have been removed. These events, all welcome, have combined to make the donor pool smaller and higher risk and the number of people who would benefit from transplantation greater. For organ transplantation to succeed, a robust administrative, legislative, and ethical framework must be in place, and the last decade has seen major changes (Table 1). Of those milestones listed, two have had major impact: the formation of NHS Blood and Transplant (NHSBT) as a special authority of the NHS and the report of the Organ Donation Task Force. NHSBT was formed in 2006 with the merger of the National Blood Service with UK Transplant. The merger was primarily as a consequence of the wish to reduce the number of “quangos” (quasi-autonomous non-governmental organizations) and gave NHSBT the statutory authority, among other responsibilities, for ensuring a supply of organs for transplantation, for maintaining the National Transplant Waiting List, and for the selection and allocation of solid organs from deceased donors. The remit for organ donation covers all four UK nations (England, Scotland, Wales, and Northern Ireland) and is the only NHS body that has a UK-wide remit. However, NHSBT does not commission organ transplantation: commissioning of donation, transplantation, and donor characterization is done now at a national level for all four nations, but the nations work together as organs donated by deceased donors are considered a national resource. The second major impact was the publication of the report of the Organ Donation Task Force. This task force, chaired by Elisabeth Buggins, recognized the relatively weak performance of the UK in organ donation and made 14 recommendations. It was suggested that implementation of all recommendations should result in a 50% increase in deceased donors over 5 years: the recommendations were put in place and, as can be seen in the following pages, the target was achieved, despite a falling potential donor pool and more higher risk donors, primarily because of an increase in donors after circulatory death. The strategy based on the recommendations lasted until 2013 and a new strategy until 2020 was launched in July 2013. A further recent development has been the transposition into UK law of the recent EU Directive on the Standards and Safety of Organs for Transplantation, which has placed a further layer of regulation on the organ donation and transplantation pathway; the full impact of these changes is yet to be seen.TABLE 1: Some significant milestones to provide a framework for UK Organ Donation and TransplantationAgainst this evolving background, some of the UK data are presented relating to organ donation and transplantation. The UK Transplant Registry was first formally established in 1972, and it has grown to become a major national resource. Today, the Registry includes the Potential Donor Audit, the National Transplant Waiting List, and records of all transplants from deceased and living donors in the UK with follow-up of both patient and graft. There are links with the Office for National Statistics (ONS) Register so that all recipient deaths are captured. It is important to acknowledge the contribution of all those who have contributed to making the Registry a complete picture of UK donation and transplantation; without the consistent and enthusiastic support of clinicians, clerical staff and managers in donor hospitals, commissioners, retrieval teams and the statistics team, data management staff, IT staff, and managers in NHSBT, the Registry would be less complete and a far less valuable national resource. It is recognized that without donation, there is no transplantation and therefore the data presented here represent the commitment and enthusiasm of a very wide spectrum of people: intensive care and emergency department doctors and nurses, anesthetists, microbiologists, radiologists, pathologists, clinical scientists, transplant surgeons, physicians and nurses, laboratory scientists, the pharmaceutical industry, ethicists, managers, statisticians, researchers, and, most importantly, donors and their families. Details of policies and patient data including outcomes are available on the NHSBT website (www.odt.nhs.uk). NATIONAL OVERALL DATA During the last decade, there has been a increase in the number of deceased solid organ donors in the UK from 709 in 2003 to 1,164 in This increase has been a result of an increase in donation after circulatory death (DCD) from 1.1 to 7.9 donors per million population between 2003 and 2012, a organ donation after brain death (DBD) has remained at pmp During this decade, the of donors has with a increase in both age and body mass index so that the proportion of donors 60 years and over has increased from 14% to and the proportion of donors who were ≥30 has increased from 14% to The mean age of donors in 2012 was years for DCD donors and years for DBD donors. 2012, of the 1,164 deceased solid organ donors, most died from and were as with only and (Table 1: of deceased donors in the UK, 2003 to Donor rates per million population in the UK, 2003 to of deceased donors in the UK, 2003 to of deceased donors in the UK, 2003 to that be for all deceased donors, numbers in this are the numbers of donors for which was not numbers of of organ donors in the UK, 1 to 2008 and 2012, the number of transplants has increased from to (Table The number of transplants from deceased donors has increased from to in the UK, 2008 to is a between the increase in number of deceased donors and the smaller increase in number of organ This is to the increase in DCD DBD not only are organ donation rates higher from DBD donors with DCD donors the proportion of organs retrieved from DBD donors that are is in of for all DBD donor organs pancreas with to of DCD organs for 2012, of DBD donors and 14% of DCD donors not result in any organ Organ donor rates per million population in the UK, 1 to Donor For over a decade, NHSBT has with clinicians and for Organ Donation to an donor of all deaths in those years or in and more in UK The that there are and donors year of the to organ donation is the family consent rate in the UK (Table and this has very over despite the changes as a result of the implementation of the Organ Donation of DBD and DCD donors, to that have been in the donors who in the for less of DBD and DCD from the Potential Donor Audit, to 2012 donors after brain death (DBD) are as patients for death was following and who had no contraindications to solid organ donation. donors after circulatory death (DCD) are as patients who had and death was within with no contraindications to solid organ donation. Donation The number of donated from DBD donors has remained at per year over the last years, there has been a increase in the proportion of retrieved not (from 3% to the number of donated from DCD donors has increased from in 2003 to in 2012 with the proportion that are retrieved but not from to Waiting The number of new registrants year for a deceased donor transplant has increased from to in 2012 During this the numbers of patients on the waiting list has risen from on 2003 to a of at the of 2008 but has year to at the of This a in the number of transplant list patients and with an increase in the number of deceased and living donor of new kidney and patients on the transplant list at in the UK, 2003 to There are adult kidney transplant in the UK and from DBD donors were first on a national in The was based on two of to transplant and transplant It based on the of donor or recipient were in and and a national kidney allocation was introduced for all from DBD donors in 2006 The was based on the but with less emphasis on and is in in the of patients for donor are waiting and age combined transplants for outcomes and age between donor and recipient and and patients are for and patients are generally over adult This allocation is based on with less emphasis on the patients of or adult patients of or adult and patients other patients any transplants with two or two of the can be at from DCD donors have been on a it is to a national allocation for DCD in The will be based on that for DBD donor kidneys, it the of in DCD kidney transplantation and has more of an emphasis on Of the adult registrants the transplant list in were within the first year and in the first 5 years 77% were waiting at the of the first year and at 5 years after of patients had died a graft and had been removed from the list for Waiting times between but the based on patients between 2006 and 2009 is for adults and for of and B while patients have the (Table for new adult kidney only made in the UK, to Median waiting times to kidney by The number of transplants in the UK has increased by in the last years: from in 2008 to 2,709 in 2012 (Table This a increase in the number of living donor (from to and in DBD (from to but a increase in DCD (from to The number of kidney transplants (including has increased from in 2003 to in 2012 this has been a result of an increase in living donor transplants (from to pmp) and DCD kidney transplants (from to pmp) while the number of DBD kidney transplants has (from to pmp) Of the 2,709 transplants in 2012, were in of kidney transplants in the UK, 2003 to transplant rates per million population in the UK, 2003 to donor kidney there has been a increase in the number of living donor kidney transplants between 2003 and numbers have Although the number of transplants from donors has increased from in 2003 to in 2012, as a proportion of the rate has from 77% to This is because of an increase in transplants from and or or donation to as the National Donor The number of donors has increased from 3 in to 60 in The and and are important in living kidney donor transplantation and the to transplantation for donor kidney transplants in the UK, 2003 to kidney The number of kidney transplants in adults from DBD donors has over the decade from to 2012, of the 2,709 transplant had at of Of these were of adults and of both adult and a higher proportion of living donor deceased donor kidney transplants were of the need for of adults and of at of DBD kidney transplants to that the implementation of the DBD kidney allocation in 2006 has been with an increase in the proportion of recipients a DBD kidney with to four but not at the of there are now very with 5 or This the of the allocation which many more waiting patients to transplantation. The DBD allocation in four transplants from DBD in the UK by 2003 to proportion of level 3 increased with the of the 2006 to transplantation of more waiting DCD kidney transplants are less the allocation This will as national allocation are transplants from DCD in the UK by 2003 to adult patient and graft survival despite donor with a but rise in graft survival but stable patient survival in recipients of DBD the outcomes of both graft and patient after DCD kidney transplantation are over yet a in recent years, the higher risk donors donor graft survival rates for adult patients show improvement over with of patients at 5 years after their transplant There has been a improvement in graft outcomes for recipients of DBD while patient survival rates very graft and patient survival after living donation have kidney after brain to kidney after circulatory to kidney to kidney after brain to kidney to Donation There has been a increase in the number of donated from both DBD and DCD donors over the years 2003 to from to DBD and from to DCD only two of DBD and the retrieved DCD are The rate to other organs is to a higher of pancreas retrieval because of the of the organ within the body a more retrieval to the that would not the liver or kidney a pancreas not to Waiting The number of new registrants for pancreas and increased from in 2003 to in 2008 and has remained The number of patients awaiting a pancreas has a in 2009 Of those who were in had been and 6% had been removed or died at the of the first year of new pancreas and and patients on the transplant list at in the UK, 2003 to for new adult and kidney and pancreas made in the UK, 2009 to the UK, there are pancreas transplant and pancreas transplant were on a However, were on a national an allocation based on waiting from retrieval to donor and donor and recipient age The weight to a of is for DCD donors for DBD donors. Donor is to from donors primarily not to pancreas waiting list patients and those from higher donors primarily to waiting list Of the registrants the pancreas transplant list in were within the first year and in the first 3 years were waiting at the of the first year and at 3 years after of patients had died a graft and had been removed from the list for The waiting to pancreas transplant is with some to (Table Median waiting times to pancreas by The first pancreas transplant was in the UK in 2005, and in 2012, there were transplants with organ Of the 246 were from DCD donors to a transplant rate of pmp in 2012 from of pancreas and transplants in the UK, 2003 to and transplant rates per million population in the UK, 2003 to of the pancreas transplants are simultaneous pancreas and kidney transplants the proportion of pancreas after kidney transplants has The of pancreas transplants are for 1 pancreas transplants are in patients and transplants in the UK by 2003 to pancreas kidney graft survival has 2003 to 2005, and most recent transplants have DBD graft survival of 84% and patient survival of Outcomes of transplants from DCD are better but the relatively numbers and the potential selection it is not this is of any clinical kidney and pancreas after brain 2003 to kidney and pancreas after circulatory 2009 to patient survival remains over there has been in graft survival over the decade, with DBD and DCD graft survival and transplants donor after brain 2003 to transplants donor after circulatory 2009 to Donation Although there is some there has been a increase in the number of donated from both DBD and a increase in DCD The proportion of DCD is as a of all deceased donor and for of The proportion of retrieved but not is for DCD there are for this but the most is of the 2012, there were DBD liver donors and DCD liver donors. Waiting There are liver transplant in and in the for to the national transplant waiting list were be their without transplant was to be less following a transplant at 1 The was the UK for and, a survival of a of is a for For those with liver the were There was a of liver transplantation is for of (such as or the not the (such as those with should have a of after transplantation of at 50% at 5 years with a of to the Over the last years, there has been a increase in the number of patients year the number of adults on the waiting list has increased from 2003 but to have in the last of new liver and patients on the transplant list at in the UK, 2003 to with or graft are for and have to donated the UK. there are no donated are to the and to other there is no of to transplantation, the allocation for is to there is a risk of death for patients at Of those adults who were for transplants two had a graft within 1 year and 14% were 19% had died a graft was available or were removed from the list, primarily because for new made in the UK, 2009 to waiting to liver transplant is with some to (Table Median waiting times to liver by the number of liver transplants has a increase in over the last decade, from in 2003 to in 2012 This to rates of transplantation of to pmp has been primarily by a rise in DCD the number of DBD donors has remained There has been a rise in living donors but numbers very 2012, of the liver transplants were from living donors, some of were There was living liver donation in The of the deceased donor liver transplants were with for of the transplants and for for those that are for have been there is no a liver should be the donor has the following donors after brain death who are less years, more and have been in the for less 5 donors must be for there is an there is no or combined lung and liver patient of liver transplants in the UK, 2003 to transplant rates per million population in the UK, 2003 to deceased donor liver transplant recipients are between and and was in of those liver disease and liver Of many recipients have (such as hepatitis virus and but the to the to the Of the liver transplants in 2012, were in patients as donor liver transplants in the UK by 2003 to of adults DBD is with with patient survival of there has been improvement in the survival of adults a DCD liver, with patient survival of of liver recipients of a DBD graft remains stable at over at 1 year liver to liver after brain to Donation The number of donated in the UK by DBD donors has remained stable at per as a consequence of the of lung the number of donated but not has from in 2003 to 6% in the last 5 years, the number of retrieved from DCD donors has risen to in 2012, a relatively proportion of the number of the number of donated retrieved from in 2003 to in but has increased to in and in have been retrieved but not in the last Waiting There are heart and lung transplant in the UK. The number of new registrants for lung or transplants has remained stable over the last decade the number on the waiting list has by over the last years to at the of The waiting to lung transplant is 311 days, with patients of and B the to transplant (Table Median waiting times to by organ and of new and heart and lung and patients on the transplant list at in the UK, 2003 to number of new registrants for heart transplantation remained at per year until but has increased to new patients per year in the last years The waiting list has more with patients on the transplant waiting list at the of The waiting to heart transplant is days, with patients of the to transplant (Table of new heart and patients on the transplant list at in the UK, 2003 to and are at on a but this is There is no significant in patient from between that there is no of to and not by the are to other in The allocation for is that there is an as those on support with or and a non-urgent are first to the for an recipient and for an there is no recipient the organ is for non-urgent patients in the There is no for so are and to other on a Of the adults 2009 for a had transplantation in the first remained on the list, and 24% had been removed or died waiting for a graft Of those adults for a non-urgent heart had retrieved a graft within 1 year and 24% remained on the Of the had died and had been removed from the list, as were for new made in the UK, 2009 to for new non-urgent made in the UK, 2009 to the number of lung and transplants a but increase over the last decade with an increase in the number of from DCD donors (from in 2003 to 19% in There was living donor transplant in The deceased donor into transplant rates of and pmp for DBD and DCD donors in 2012, disease and lung disease the for lung of deceased donor and heart and lung transplants in the UK, 2003 to and heart and lung transplant rates per million population in the UK, 2003 to the number of in the UK has remained and with a fall in the rate of heart from to 2.2 pmp the increase in DBD donors and the age and of those donors. There has been an increase in the proportion of heart transplants in the that the of heart transplants are in patients (from in 2003 to 68% in The for heart transplantation remains but the proportion for heart disease has a over the last years to of transplants in patients as those transplantation 3 of lung transplants and of heart transplants in of heart transplants in the UK, 2003 to transplant rates per million population in the UK, 2003 to survival of adults DBD donor lung transplantation has but remains of adults a lung from a DCD donor is at 1 year lung to outcomes for both adult and heart recipients relatively at and at 1 year to Over the last decade, the number of organ transplants in the UK has increased as a result of of organs from donors after circulatory death and because of an increase in living donor transplantation. The Organ Donation the increase in deceased organ donors and a 50% increase in deceased organ donor numbers was in the 5 years to 2013. It is that the increase has been by donors and organs as older and less donors are and for transplantation. The decade further in organ donation and transplantation as donor organ and to the number of organs for The new UK strategy Organ to the need to all within the donor but the need to increase family consent rates for organ donation, which in the UK. The UK National Transplant Registry the contribution of all those who have contributed data to make the Registry as as The in NHS Blood and Transplant was by the UK Transplant Service which UK Transplant into NHS Blood and Transplant. There are many people who have and to support the and without their and the Registry not be would to the transplant surgeons and the health care in the and the data managers and the recipient of in the transplant the and laboratory staff, the and in Organ the of the Donation and the Organ and the of the of Organ Donation and and the of Statistics and of NHS Blood and Transplant.