East of Scotland Renal Transplantation Service Annual Report The Royal Infirmary of Edinburgh April 1 st 29 to March 31 st 21 November 21
CONTENTS Page Introduction 3-4 Recipient Transplant Co-ordinators Report 5-6 Scottish Donor Co-ordination Service Report 7-8 Living Donor Kidney Transplantation 9-1 Waiting List and Renal Transplant Statistics 11-22 Post-Transplant Outpatient Activity 23 Appendix I 24 2
Introduction Kidney transplantation activity in the UK for the last two financial years is summarised in five tables in Section LAG(1)18, Appendix 1. It will be noted that the trend of increasing registrations for kidney transplantation in the UK has slowed down. Indeed there has been a marginal decrease in the size of the (active) UK kidney transplantation waiting list between April 29 and April 21. Small but meaningful increases were observed in DCD (deceased cardiac death, i.e. non-heartbeating) transplants and living donor transplants in the last year. DBD (deceased brain death, i.e. heartbeating deceased donor) transplant numbers have remained unchanged. In the East of Scotland the trends have been slightly different. Overall kidney transplantation activity increased by around 4%. The relative increases were greater in living donor transplantation and DBD transplantation, with a small decline in DCD transplants. The ongoing increase in activity is clearly very welcome and represents close to a 1% increase in kidney transplantation numbers in the East of Scotland over the last five years. As a natural consequence, workload for both inpatient and outpatient management of patients and for operating theatres has increased considerably. This has raised concerns about the pressures on inpatient beds, theatres and outpatient clinic facilities. There has been a recent workshop to address these issues and highlight them with the Clinical Management Team with the aim of working towards a more sustainable programme. The benefits of increased transplantation are varied, not least for patients. We have also been able to offer transplantation training to Renal SpRs (specialist registrars) from both Aberdeen and Dundee, who in a three-month period are assured of a wide-range of exposure. The Renal Transplant Unit aims to further promote living donor transplantation an area where Edinburgh acknowledges relatively poor rates compared to other UK units. We performed 28 live donor nephrectomies and 26 transplants in 29. There is a need to improve our processes for the living donor transplant programme. Part of this requires us to raise with patients the concept of living donation early and emphasise to them that a donor need not be a blood relative. A parallel strategy is offering ABO (blood group) incompatible transplantation. This new initiative has started in the last year. The first graft was performed with a successful outcome. The programme involves close collaboration and input from SNBTS (Scottish National Blood Transfusion Service), Nephrology, Transplant Co-ordination and Transplant Surgery. There is still a need, highlighted in last year s annual report, to capture sufficient data to enable accurate reporting of acute rejection rates; any changes in post-transplantation CMV (cyto megalo virus) rates as a consequence of agreed changes in the immunosuppression protocol; and graft outcome at one year. We remain keen to move forward to establish the comprehensive collection of a defined data set which will give valid outcome data for all patients transplanted in Edinburgh. ehealth resource and support is needed to enable this. It was decided to try and utilise the Scottish 3
Renal Registry to avoid duplication of current data collection and ensure close to 1% data collection. This would be facilitated by a Scotland-wide renal ehealth system. Immunosuppression protocol At our most recent annual protocol review meeting, with representation from all contributing units, it was agreed to switch to a Tacrolimus, MMF (mycophenolate mofetil) and Prednisolone regime with anti-il2 receptor antibody induction. To cover expected higher CMV infection rates, we agreed to broaden CMV prophylaxis to all D+ or R+ transplants and prolong duration of prophylaxis to six months. It was also decided to change the initial treatment for acute rejection (pulsed methylprednisolone) from 25mg X3 to 5mg X3. 4
Recipient Transplant Co-ordinators Report Recipient transplant co-ordinators fulfil the following roles: Pre-Transplant assessment clinics and work-up On-call cover in the East of Scotland for kidney, and throughout Scotland for pancreas and islet cell transplants Daily support and education throughout hospital admission Pre-discharge information Nurse-led transplant clinics Outreach clinics MDT preparation and Education Local and national Audit First point of contact for patients and families and other units within Scotland Links with the media Promoting our service to other health boards and within co-ordination networks Protocol development. Recipient transplant co-ordinator posts are divided as follows: 1 fully-funded renal recipient transplant co-ordinator in Edinburgh 1 seconded renal recipient transplant co-ordinator in Edinburgh (funding not secure) 1 seconded renal recipient transplant post (now vacant) 1 renal recipient transplant co-ordinator in Ninewells (.5 funding not secure) 1.5 fully-funded pancreas/islet recipient transplant co-ordinators covering Scotland. Activity in the nurse-led post-renal transplant clinics continue to increase and in some areas we have had to increase the number of clinics. We now run two outreach clinics in Fife, at Queen Margaret Hospital and the Victoria Hospital. The clinic in St John s is almost at capacity and we may have to look at increasing the sessions next year. The increase in outpatient activity is shown in Figures 1-3. 25 2 15 1 146 189 187 228 5 3 25 26 27 28 29 Fig 1. Royal Infirmary of Edinburgh nurse-led clinic 5
6 5 4 3 2 1 49 37 4 42 3 25 26 27 28 29 Fig 2. St John s Hospital outreach nurse-led clinic 9 85 86 8 75 7 77 77 72 65 26 27 28 29 Fig 3. Queen Margaret Hospital and Victoria nurse-led clinic 6
Scottish Donor Co-ordination Service Report 29/21 has been another challenging and exciting year for our service. We have doubled the number of donor co-ordinators within Scotland and recently our name has been changed to Specialist Nurses Organ Donation (SN-OD). We are now all employed by NHS Blood and Transplant (NHSBT). This last year has seen all the specialist nurses become resident within their local hospitals: Royal Infirmary of Edinburgh Irene Young St John s Hospital Lesley Howard Western General Hospital Lesley Howard Aberdeen Royal Infirmary Carolyn Reid/Jane Wordie All Scottish donating hospitals have now appointed clinical leads in organ donation (CLODS) and are progressively working towards setting up the donation committees that will steer and monitor donation activity. Recently, the Golden Jubilee Hospital in Glasgow has shown donor potential (level 3) and has therefore been added to the list, and they are going to appoint a clinical lead in the near future. Over the last year, we have been training new specialist nurses and now have a fully competent team. NHSBT has introduced a new form of receiving and reporting information, which, with the CLODS, will enable us to feedback comprehensive donation activity on a regular basis. Over the last financial year we have seen a steady increase in organ donation activity, as detailed in the chart below: 29-21 Activity 25 2 193 15 1 63 79 5 19 Total Referrals Actual Donors Non Proceeding Donors 28 Family Refusal 4 Proc Fiscal Refusal Donor Decline 7
Scottish Donor Co-ordination Service Report (continued) As you will see in Map 1, Scotland continues to do well with organ donation registration percentages: Map 1 Proportion of population registered on the NHS Organ Donor Register by February 21, by Strategic Health Authority Registrants (million) 35% <.6.6 - <.8.8 - <1. 27% 26% 26% 27% 1. - <1.2 1.2 - <1.4 1.4 - <1.6 28% 23% 26% 29% >= 1.6 34% 29% 24% 32% Future developments It is hoped that we will be holding a gathering in Scotland later this year for all donor families. The last year has been a very positive time involving a lot of progress with the SN-ODs, CLODS and all our donating hospitals. Liz Waite Donor Transplant Co-ordinator Team Leader 8
Living Donor Kidney Transplantation There were 26 living kidney donor transplants performed between April 1 st 29 and March 31 st 21. This represents a 3% increase from the previous year. In addition, two altruistic donor nephrectomies were performed and these kidneys were exported. All grafts are functioning. Seventeen recipients of live donor transplants were on haemodialysis at the time of transplant, seven were on peritoneal dialysis and two transplants were preemptive. Live donor transplant by recipient centre. Lothian 9 Aberdeen 7 Highlands 3 Dundee Fife Other 2 2 2 Borders 1 1 2 3 4 5 6 7 8 9 Paired exchange The national paired/pooled programme continues to offer transplants to highly sensitised or blood group incompatible transplants. In the period January 27 to July 29, 253 patients enrolled into this scheme and 35% were matched with suitable live donors. Thirty-two living donor transplants were performed in the UK with exchange scheme live donors. This represents 1.8% of UK live donor transplants in 28/29. Two Edinburgh patients were matched last year. In April, a match and exchange transplantation took place between Edinburgh and Oxford. In December, Edinburgh was one of the first centres involved in a successful three-way exchange. 9
Altruistic donation The altruistic donation programme is beginning to have an impact nationally. Since its inception in July 27 until August 29, 23 altruistic donor transplants have been performed in the UK, representing 1.7% of all live donor transplants in 28/29. In Edinburgh we have performed a total of five altruistic donor nephrectomies. Two have been carried out between 1 st April 29 and 31 st March 21. Blood group incompatible transplants Edinburgh performed its first blood group incompatible transplant in November 29. This is a new development and a clinically demanding procedure requiring close co-operation between staff in H&I, SNBTS, Nephrology and Transplantation. Laparoscopic nephrectomy Twenty laparoscopic nephrectomies have been performed with one conversion to open. There have been seven open nephrectomies. Transplant outcome One- and five-year graft survival following first living donor kidney transplant Survival period Year of transplant No. in analysis Survival 95% confidence int. One year 22-28 14 97.1% 91.3 99.1% Five years 1997-23 88 88.1% 79.1 93.4% One- and five-year patient survival following first living donor kidney transplant Survival period Year of transplant No. in analysis Survival 95% confidence int. One year 22 28 14 99.% 93.2 99.9% Five years 1997-23 88 94.% 86.2 97.5% 1
Waiting List and Renal Transplant Statistics UK active waiting list all organs (except kidney) 26 to 21 4 35 3 25 2 15 1 5 35 357 322 31 262 265 268 275 258 254 253 216 178 146 122 14 88 85 91 91 52 6 41 38 43 48 26 15 15 18 14 12 18 12 2 25/26 26/27 27/28 28/29 29/21 Heart Lung Heart/Lung Liver Pancreas Kidney/Pancreas Other multiorgan UK waiting list kidney-only (active) 26 to 21 8 7 5766 632 679 692 6892 6 5 4 3 2 1 25/26 26/27 27/28 28/29 29/21 11
Total number of kidney patients on the waiting list for East of Scotland* 25 to 29 Edinburgh Dundee Aberdeen Inverness Scotland 25/6 25 64 72 42 566 26/7 29 64 76 45 61 27/8 193 5 86 43 775 28/9 158 5 84 43 725 29/1 167 75 51 22 73 *Excludes kidney/pancreas patients 12
Total number of patients on the waiting list for East of Scotland 29 to 21 8 7 73 6 5 4 3 2 1 167 75 5 22 26 34 1 4 Inverness Aberdeen Dundee Edinburgh Scotland Kidney Kidney/pancreas Edinburgh transplant assessment clinic appointments 12 1 8 6 4 17 1 85 88 89 85 72 76 73 27/8 28/9 29/1 2 New Patient Return Patient Live Donor These clinics are run by both surgeon and co-ordinator 13
Patients added to the Edinburgh waiting list 25 to 29 14 12 1 8 6 4 2 119 11 112 92 74 25/6 26/7 27/8 28/9 29/1 Numbers died or removed from Edinburgh s kidney waiting list during April 29 - March 21 Dialysis centre Died on list Removed from list Inverness 4 3 Aberdeen 1 1 Edinburgh 6 15 Dundee 3 Total 11 22 14
Donor statistics Deceased solid organ donors in Scotland 24-29 Solid organ donors (per million population) 25/26 26/27 27/28 28/29 29/21 Kilmarnock 1 2 3 1 Ayr 1 3 Borders 1 1 1 Greenock 1 1 Paisley 2 1 6 1 Kirkcaldy 2 1 2 Dunfermline 3 1 1 5 Glasgow 14 12 1 19 16 Inverness 2 7 1 2 Wishaw 2 1 2 East Kilbride 3 1 2 3 Aberdeen 1 3 4 6 5 Edinburgh 9 14 19 2 18 Dundee 4 2 1 7 2 Livingstone 1 1 2 Perth 1 1 2 Falkirk 1 Stirling 2 3 1 1 Dumfries and Galloway 1 3 2 1 2 Scotland 48 5 54 72 63 15
Donor statistics (continued) Table below shows proportion of DBD versus DCD deceased donors in Scotland. 8 7 6 5 4 3 6 13 21 16 3 2 45 44 41 51 47 1 25/26 26/27 27/28 28/29 29/21 DBD DCD UK and Ireland figures for deceased solid organ donors 1 st April 25 to 31 st March 21 15 1 84 877 894 967 128 5 25/26 26/27 27/28 28/29 29/21 16
Donor statistics (continued) UK and Ireland figures for deceased solid organ donors 1 st April 29 31 st March 21 Donor Type England Scotland Wales N Ireland Republic of Ireland* Total DBD 525 47 28 18 69 687 DCD 35 16 13 334 Total 83 63 41 18 69 121 *Data for Republic of Ireland not complete 17
Kidney transplant statistics Kidney transplant offers declined 8 7 6 5 4 3 2 1 68 5 29 22 26/7 27/8 28/9 29/1 Kidney/pancreas transplant offers declined 2 15 1 11 199 169 158 5 26/7 27/8 28/9 29/1 Deceased donor kidney transplants by region 25 to 29 3 25 2 21 28 25 19 25/6 26/7 27/8 28/9 29/1 15 18 19 12 1212 11 12 14 13 16 13 1 5 1 7 6 4 2 2 11 1 11 1 9 9 6 5 3 3 Lothian Borders Fife Tayside Grampian Highland Other 8 5 18
Kidney transplant statistics (continued) Number of kidney transplants carried out in Edinburgh and Scotland 25 29 Cadaveric Scotland Cadaveric Edinburgh Live Scotland Live Edinburgh 17 16 15 14 13 12 11 1 9 8 7 6 5 4 3 2 1 16 143 127 18 88 84 83 68 72 54 48 46 38 4 26 29 26 16 2 14 25/6 26/7 27/8 28/9 29/1 Edinburgh cadaveric 9/1 includes 12 SPK, 1 liver/kidney, 71 kidney Edinburgh live 9/1 includes two altruistic donors Proportion of DBD versus DCD kidney transplants in East of Scotland 8 7 6 21 14 5 4 11 3 2 1 2 3 3 31 41 47 57 25/26 26/27 27/28 28/29 29/21 DBD DCD 19
Kidney transplant statistics (continued) Deceased donor kidney transplant recipient age group 25 to 21 3 25 2 15 1 5 11-2 21-3 31-4 41-5 51-6 61-7 7+ 25/6 26/7 27/8 28/9 29/1 Number of DR mismatches for all renal transplants 1 2 25/6 32 16 12 26/7* 25 27 1 27/8 34 56 12 28/9 5 41 13 29/1 44 57 8 *26/7 one result unknown 2
Dialysis treatment prior to deceased donor kidney transplant Hospital haemodialysis CAPD / APD Pre-dialysis Home haemodialysis 25/6 3 2 6 26/7 44 13 5 27/8 54 35 12 28/9 61 2 7 29/1 58 21 4 All kidney patients transplanted showing graft number 25 to 21 1 9 92 92 9 8 7 6 5 4 3 2 1 56 52 18 4 5 7 9 1 2 1 2 1 1 25/6 26/7 27/8 28/9 29/1 1st 2nd 3rd 4th 21
Kidney transplant statistics (continued) One- and five-year kidney graft and patient survival deceased donor transplants One- and five-year graft survival estimates following first deceased kidneyonly transplant Survival period Year of transplant No. in analysis Survival rate 95% confidence int. 1 year 22 28 34 94.% 9.7 96.2% 5 years 1998-24 215 85.1% 79.3 89.3% One- and five-year patient survival estimates following first deceased kidneyonly transplant Survival period Year of transplant No. in analysis Survival rate 95% confidence int. 1 year 22 28 34 97.6% 95.1 98.9% 5 years 1998-24 215 83.2% 77.4 87.7% 22
Post-Transplant Outpatient Activity The increase in kidney and kidney/pancreas transplant outpatient activity year on year is shown in the graph below. This consists of patients attending outpatient consultant clinics at the Royal Infirmary of Edinburgh, Borders General and St John s Hospital. The nurse-led annual review clinics also comprise of Queen Margaret Hospital and Victoria Kirkcaldy. This is expected to increase over the next five years with the expected increase in donor rates. 35 3 25 2 15 1 5 2991 3158 2216 1552 1182 26 27 28 29 21 23
NHS BLOOD AND TRANSPLANT LIVER ADVISORY GROUP - OOT LAG(1)18 ACTIVITY REPORT - MARCH 21 KIDNEY TRANSPLANTS 3 All KIDNEY transplants in the UK from April 28 onwards by financial year 25 j!l 2 c.lii Q.!15 ' ci 2 1 -tr 28/29 5 _.. - 29/21 O+----T-----~--_.----._--~----,_---~----._--~----_r--_,r_--~ Apr May Jun Jul Aug Sep t::lct Month Nov OBC Jan Feb Mar 78 Number of people actively registered for a KIDNEY transplant in the UK as of the last day of each month for the preceding two years (including linear trend) 73." aeoo! '~.; 2 63. -::==-- 58 ~ ~q, filq,,j>q, rt'il>q, sq" ~ ",q, ~ "" t>'" ~,~'" _",'",j>'" ~ '" sf> ~ "," ~.<> <>,.~,~->; ~.$' ~~,..:$ a?<f cf ~tj' Q<f' ~~ ~~ #".rf #' }. ' ~~ ~t(;./cfj' ~(/- Q'"' )~,,<1 ~i' Month 1
HEARTBEATING KIDNEY transplants in the UK from April 28 onwards by financial year 125 1 ~ 75 Jl!'11 ~ 6 -er 25129 2S.....29121 Apr" M Jun Jut Aug SDp Oct Month Nov o.c Jan Fob Mar SOO NON-HEARTBEATING KIDNEY transplants In the UK from April 28 onwards by financial year 6 4 3 2 1 Ap. M Jwn Jul a.p oee Noy D Jan... Mcntt) MGr 12 LIVING KIDNEY transplants in the UK from April 28 onwards by financial year 1 ado I6 < ~ 1; ~ 4 -e- 28/29 2 -... 29/21 Apr Ma. Jun Jut Aug Sap Ocl reov Dsc Jan Fob Mar 2 Month