Australia & New Zealand Pancreas. Transplant Registry Report Inquiries or comments should be directed to the secretariat at:

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Australia & New Zealand Pancreas Transplant Registry Report 1984-2013 This report is a compilation of data provided by the four current Pancreas transplant units in Australia and New Zealand: Auckland Renal Transplant Group, New Zealand; National Pancreas Transplant Unit Monash Medical Centre, Clayton, Victoria, Austin Hospital and National Pancreas Transplant Unit, Westmead Hospital NSW Australia. The registry is funded in part by a grant from the Commonwealth Department of Health and Ageing. Inquiries or comments should be directed to the secretariat at: National Pancreas Transplant Unit Westmead NSW 2145 Phone: 61 2 9845 6962 Fax: 61 2 9633 9351 Email: paul.robertson@health.nsw.gov.au

Australia & New Zealand Pancreas Transplant Registry Report 1984-2013 Edited by Abhijit Patekar, Paul Robertson, A/Prof Angela Webster and Prof Jeremy Chapman Participating Centres Auckland Renal Transplant Group Dr Helen Pilmore Prof Stephen Munn Monash Medical Centre Prof Peter Kerr A/Prof John Kanellis Dr Bill Mulley Mr Alan Saunder Mr Roger Bell Mr Ming Yii Miss Nancy Suh Ms Tia Mark Ms Elaine Kennedy Director of Nephrology Director of Transplantation Physician Director of Surgery Surgeon Surgeon Surgeon Renal Pancreas Transplant Coordinator Transplant Clinical Nurse Consultant Westmead Hospital Prof Henry Pleass Prof Philip O Connell Dr Brian Nankivell A/Prof Angela Webster Dr Germaine Wong Dr Brendan Ryan Dr Vincent Lam Dr Lawrence Yuen Prof Richard Allen Dr James Holmes-Walker Ms Kathy Kable Mr Paul Robertson Dr Wayne Hawthorne Director, National Pancreas Transplant Unit Director, Renal & Islet Transplantation Unit, Westmead Physician Physician Physician Surgeon Surgeon Surgeon Surgeon Endocrinologist Transplant Nurse Practitioner Transplant Unit, Westmead Hospital Senior Research Fellow National Pancreas Transplant Registry Prof Jeremy Chapman A/Prof Angela Webster Mr Abhijit Patekar Mr Paul Robertson Ms Julie McKelvey Director Acute Interventional Medicine, Westmead Hospital Registry Executive Officer Data Analyst Transplant Co-ordinator Registry Clerk Data included in this report was extracted from RISC (Renal Information System Catalogue) on the 26 th May, 2014, for all people transplanted up to the end of 2013. Please note new data is added to the registry regularly.

Summary 613 Pancreas transplants have been performed in Australia and New Zealand (ANZ) from 1984-2013 (Excluding Islet transplants) In 2013, 36 transplants were performed: Auckland (3) Monash (13) Westmead (20) Transplant by category: SPK (36), PTA (0), PAK (0), PLI (0) From 2002-2013, 53 Islet transplants have been performed in 23 patients. Glossary SPK - Simultaneous Kidney Pancreas Transplant PTA - Pancreas Transplant Alone PAK - Pancreas after Kidney Transplant ITA - Islet Transplant Alone BD - Bladder Drained Pancreas ED Enteric Drained Pancreas PLK - Pancreas Liver Kidney PLI Pancreas Liver Intestine [1]

Introduction The Australia and New Zealand (ANZ) Pancreas transplant data has been obtained from the transplant centres in Auckland Renal Transplant Group (Auckland), Monash Medical Centre (Monash), Austin Hospital (Victoria) and National Pancreas Transplant Unit at Westmead Hospital (Westmead). Auckland commenced in 1998. Data has also been obtained for comparison from ANZDATA. There have been 613 solid organ pancreas transplants in Australia and New Zealand (ANZ) between the dates of November 1984 to December 2013. No activity was recorded in 1985 and 1986. There have been 53 Islet cell transplants in Australia between the dates of January 2002 to December 2013. Analysis The aim of this report is to record all pancreas transplant activity in Australia and New Zealand. A functioning pancreas transplant is defined as a recipient free of exogenous insulin dependence. Kidney transplants are defined as functioning if recipients are dialysis free. All causes of death are included in the survival analysis. Patients receiving a second transplant after failure of the first transplant are censored for Patient survival for the first transplant at the date of the second transplant. Kaplan-Meier survival curves were used to illustrate the survival distributions generated using Stata software version 13 (StataCorp, College Station, TX USA). The distribution of Patient survival, Kidney graft survival and Pancreas graft survival was analysed by four periods (1984-1999, 2000-2004, 2005-2009 and 2010-2013), in pancreas and kidney (SPK) recipients. Changes since last year: the following two observations are included in this report. Survival era categories are now quartiles not quintiles [2]

Number of Pancreas transplants Australia & New Zealand Pancreas Transplant Registry Report 1984-2012 Figure 1 illustrates the number of pancreas transplants (excluding islets) in ANZ between 1984 and 2013. The transplants were performed in Westmead (397), Monash (166), Auckland (46), RPA (1), RMH (1), QEH (1), Austin (1). In 2013, 36 transplants were performed: Auckland (3), Monash (13), and Westmead (20). The number of transplants in 2013 decreased by nearly 14% compared to 2012 but future growth is predicted looking at increasing number of organ donors. The figure also show the variation in the number of transplants over last 14 years(2000-2013). The number of transplants has substantially increased in last decade compared to previous years. Figure 1: Number of Pancreas transplants by centre in Australia and New Zealand, 1984-2013 [3]

Pancreas Transplant by Category Figure 2 shows the pancreas transplants by category: Simultaneous pancreas-kidney transplant (SPK), Pancreas after kidney (PAK), Pancreas transplant alone (PTA). SPK is the major pancreas transplants by category in ANZ at 97% with one simultaneous Pancreas/Liver and Kidney which was performed in 2005 and one Liver/Pancreas/Intestine in 2012. All 36 transplants performed in 2013 were SPK. Figure 2: Pancreas transplant by category in Australia and New Zealand, 1984-2013 [4]

Number of Islets transplants Figure 3 illustrates the number of islet cell transplants in Australia between 2002 and 2013. The transplants were performed in Westmead (32), St Vincent (12), RAH (8) and CNAR (1). In 2013, 1 transplant was performed: Westmead (1). Figure 3: Number of Islets transplants by centre in Australia, 2002-2013 [5]

Gender of Donor and Recipient Figure 4: Gender comparison Donor and Recipient for Pancreas transplants, 1984-2013 More male donors were accepted than female for solid organs. The proportions remain very similar compared to last year. Recipient gender was more equally distributed (52.61% Male vs 47.39% Female) [6]

SECTION 1: DONOR REVIEW Donor Demographics Donor Gender From 1984 2013, 56.93% of pancreas donors were males and 37.64% were females (the remaining 5.43% were unknown) Donor Age The mean donor age was 27.33yrs with the range from 4 yrs (minimum) to 61yrs (maximum). The median of donor age was 25 yrs. Donor Statistics Donor Ventilation From 1984 2013 the average number of days donors were ventilated was 2.26 days Donor Blood Group Figure 5: Donor Blood Group, 1984-2013 More than 35% of donor were O blood group, 33% blood group A with a large number of unrecorded blood group. [7]

Donor Kidney Side Figure 6: Donor Kidney Side, 1984-2013 Other donor characteristics, from 1984 2013; Number Proportion (%) Donor Biopsy Performed 99 18.5 Not performed 427 80.0 Unknown 8 1.5 Donor Cytomegalovirus status IgG positive 318 59.5 IgG negative 142 26.6 Unknown 74 13.9 Mean Median (range) Donor terminal glucose 8.3 7.5 (2.8-20.0) Donor terminal amylase 98.9 (9-2,550) Donor height (cm) 172 175 Donor weight (kg) 71 70 [8]

Donor BMI The BMI is one of the important factors determining the donor eligibility. Obese donors have fatty pancreas, which results in more difficult surgery and increased post operative complications. We have complete donor data for 534/613 donors Donor BMI 2013 Body Type BMI Number Proportion (%) Median 24.16 534 Underweight <= 18.5 18 3.4 Normal Weight 18.5-24.9 278 52.1 Overweight 25-29.9 138 25.8 Obese >= 30 29 5.4 Unknown 71 13.3 Donor Smoking & Alcohol Status Alcohol consumption is defined by a history of consumption of more than 40g/day Figure 7: Donor Alcohol & Smoking Status, 1984-2013 [9]

SECTION 2: RECIPIENT REVIEW Anastomosis Time Anastomosis time for transplantation from 1984 2013, the mean was 29 minutes and median was 29 minutes, range 14 to 70 minutes. Total Ischaemia Time Mean was 10 hours 29 Mins Median was 11 hours 29 Mins (range 5-14 hours) Exocrine Drainage Enteric Drainage of the pancreas was introduced in ANZ during 2001. Figure 8 illustrates the number of transplants by pancreas duct management. All pancreas transplants over the last 6 years used enteric drainage of the pancreas duct. Figure 8: Pancreas duct management in ANZ, 1984-2013 [10]

Primary Diagnosis of End Stage Kidney Failure The primary Diagnosis of end stage kidney failure was included in 2013 reporting. The number of diabetic recipients with other cause of end stage kidney failure was small. The number of Type ll diabetes accepted for pancreas transplantation was also small. Primary Diagnosis of End Stage Kidney Failure Number % Diabetes Type I (Insulin Dependent) 98.5 Diabetes Type II (Insulin Requiring) 0.5 Haemolytic uraemic syndrome 0.2 Interstitial nephritis 0.2 Uncertain diagnosis 0.4 Wegener's Granulomatosis 0.2 [11]

SURGICAL TECHNIQUES Site of anastomosis of recipient vein Figure 9: Recipient Vein, 1984-2013 Site of anastomosis of recipient artery Figure 10: Recipient Artery, 1984-2013 [12]

Proportion surviving Australia & New Zealand Pancreas Transplant Registry Report 1984-2012 SECTION 3: TRANSPLANT OUTCOMES REVIEW Year of Transplant Patient Survival* Pancreas Graft Survival* Kidney Graft Survival* 1 5 10 1 5 10 1 5 10 1984-1999 93 (2) 89 (3) 76 (4) 80 (3) 73 (4) 68 (4) 91 (2) 86 (3) 77 (3) 2000-2004 99 (1) 96 (2) 84 (3) 83 (3) 79 (3) 72 (4) 96 (2) 93 (2) 87 (3) 2005-2009 98 (1) 95 (2) - 91 (2) 88 (3) - 100 97 (1) - 2010-2013 98 (1) 90 (3) - - 98 (1) - = * Kaplan-Meier survivor function (with Standard Error) - Not applicable Patient survival Of the 613 pancreas transplants, we have complete outcome data for 585 people transplanted since 1984. We have observed 5,174.7 years of followup. Since then 101 people have died. Over time, patient survival has improved, and this is a statistically significant trend (P=0.0008) 0.00 0.25 0.50 0.75 1.00 Number at risk before 2000 2000-2004 2005-2009 2010 and after Patient Survival 0 5 10 15 Years since transplant 151 134 114 94 139 133 106 0 169 140 0 0 126 0 0 0 before 2000 2000-2005 2006-2009 2010 and after Figure 11: Patient Survival (by Era), 1984-2013 [13]

Proportion surviving Kidney transplant survival Australia & New Zealand Pancreas Transplant Registry Report 1984-2012 Of the 582 people with complete data, receiving a kidney with their pancreas transplant since 1984, there have been 82 kidney transplant losses. Over time, the survival of kidney transplants has significantly improved (P=0.0002) 0.00 0.25 0.50 0.75 1.00 Number at risk before 2000 2000-2004 2005-2009 2010 and after Kidney Survival 0 5 10 15 Years since transplant 150 129 115 94 138 128 109 0 169 144 0 0 125 0 0 0 before 2000 2000-2005 2006-2009 2010 and after Figure 12: Kidney Graft Survival (by Era), 1984-2013 [14]

Proportion surviving Pancreas transplant survival Australia & New Zealand Pancreas Transplant Registry Report 1984-2012 Of the 584 people receiving a pancreas transplant since 1984 for whom we had complete data, there were 3 primary non-functioning grafts, and 139 subsequent graft failures. Over time, the survival of pancreas transplants has significantly improved (P=0.002) 0.00 0.25 0.50 0.75 1.00 Number at risk before 2000 2000-2004 2005-2009 2010 and after Pancreas Survival 0 5 10 15 Years since transplant 150 109 102 88 137 108 90 0 169 129 0 0 126 0 0 0 before 2000 2000-2005 2006-2009 2010 and after Figure 13: Pancreas Graft Survival (by Era), 1984-2012 [15]

SECTION 4: PANCREAS WAITLIST REVIEW Australia & New Zealand Pancreas Transplant Registry Report 1984-2012 Figure 14: Pancreas Waitlist, as at May, 5 th 2014 Figure 15: National Pancreas Waitlist (active), as at May, 5th 2014 [16]

Patients transplanted by region Australia & New Zealand Pancreas Transplant Registry Report 1984-2012 TRANSPLANTING UNIT: WESTMEAD NATIONAL PANCREAS TRANSPLANT UNIT (NSW) Patient NSW VIC QLD SA WA TAS ACT NT TOTAL 2012-2013 9 8 2 2 3 1 25 2011-2012 10 4 4 3 21 2010-2011 8 7 4 1 1 21 2009-2010 8 8 3 3 22 2008-2009 8 2 6 2 18 43 0 29 13 15 6 1 107 TRANSPLANTING UNIT: MONASH NATIONAL PANCREAS TRANSPLANT UNIT (VIC) Patient NSW VIC QLD SA WA TAS ACT NT TOTAL 2012-2013 10 1 1 2 14 2011-2012 3 1 2 6 2010-2011 1 8 1 2 12 2009-2010 14 1 1 16 2008-2009 11 11 1 46 1 4 0 7 0 0 59 TRANSPLANTING UNIT: AUCKLAND NATIONAL PANCREAS TRANSPLANT UNIT (NZ) Patient NZ 2012-2013 3 2011-2012 1 2010-2011 1 2009-2010 1 2008-2009 5 11 [17]

Source of donor organs by region: Australia & New Zealand Pancreas Transplant Registry Report 1984-2012 TRANSPLANTING UNIT: WESTMEAD NATIONAL PANCREAS TRANSPLANT UNIT (NSW) Donor NSW VIC QLD SA WA TAS ACT NT TOTAL 2012-2013 9 1 3 8 4 25 2011-2012 10 2 3 2 4 21 2010-2011 10 3 1 6 1 21 2009-2010 11 1 3 2 5 22 2008-2009 8 3 5 2 18 48 7 13 23 16 0 0 0 107 TRANSPLANTING UNIT: MONASH NATIONAL PANCREAS TRANSPLANT UNIT (VIC) Donor NSW VIC QLD SA WA TAS ACT NT TOTAL 2012-2013 6 7 1 14 2011-2012 1 3 2 6 2010-2011 12 12 2009-2010 2 11 3 16 2008-2009 1 7 3 11 10 40 0 0 0 9 0 0 59 TRANSPLANTING UNIT: AUCKLAND NATIONAL PANCREAS TRANSPLANT UNIT (NZ) Donor NZ 2012-2013 3 2011-2012 1 2010-2011 1 2009-2010 1 2008-2009 5 11 [18]

Active waiting list by region (ready to receive transplants): TRANSPLANTING UNIT: WESTMEAD NATIONAL PANCREAS TRANSPLANT UNIT (NSW) Patient NSW VIC QLD SA WA TAS ACT NT TOTAL 2012-2013 12 9 1 4 1 2 29 2011-2012 9 11 3 6 3 1 33 TRANSPLANTING UNIT: MONASH NATIONAL PANCREAS TRANSPLANT UNIT (VIC) Patient NSW VIC QLD SA WA TAS ACT NT TOTAL 2012-2013 12 1 13 2011-2012 1 15 1 1 2 20 TRANSPLANTING UNIT: AUCKLAND NATIONAL PANCREAS TRANSPLANT UNIT (NZ) Patient NZ 2012-2013 3 2011-2012 4 [19]

All patients under consideration for transplant by region (includes all patients under current assessment as well as listed): TRANSPLANTING UNIT: WESTMEAD NATIONAL PANCREAS TRANSPLANT UNIT (NSW) Patient NSW VIC QLD SA WA TAS ACT NT TOTAL 2012-2013 43 36 8 24 1 3 2 117 2011-2012 45 45 12 22 1 4 1 130 TRANSPLANTING UNIT: MONASH NATIONAL PANCREAS TRANSPLANT UNIT (VIC) Patient NSW VIC QLD SA WA TAS ACT NT TOTAL 2012-2013 1 7 10 67 2011-2012 2 1 4 1 6 55 TRANSPLANTING UNIT: AUCKLAND NATIONAL PANCREAS TRANSPLANT UNIT (NZ) Patient NZ 2012-2013 6 2011-2012 5 [20]

New referrals received by region: Australia & New Zealand Pancreas Transplant Registry Report 1984-2012 TRANSPLANTING UNIT: WESTMEAD NATIONAL PANCREAS TRANSPLANT UNIT (NSW) Patient NSW VIC QLD SA WA TAS ACT NT TOTAL 2012-2013 16 16 4 9 1 1 47 2011-2012 14 13 6 12 3 2 50 2010-2011 11 14 4 9 2 1 41 2009-2010 15 12 4 7 1 39 2008-2009 12 15 3 9 1 40 TRANSPLANTING UNIT: MONASH NATIONAL PANCREAS TRANSPLANT UNIT (VIC) Patient NSW VIC QLD SA WA TAS ACT NT TOTAL 2012-2013 30 5 3 38 2011-2012 26 1 5 32 2010-2011 28 3 2 33 2009-2010 1 29 1 1 2 34 2008-2009 28 1 2 31 TRANSPLANTING UNIT: AUCKLAND NATIONAL PANCREAS TRANSPLANT UNIT (NZ) Patient NZ 2012-2013 4 2011-2012 5+ 2010-2011 5+ 2009-2010 2+ [21]

Stock and flow: movement of waiting list over the year TRANSPLANTING UNIT: WESTMEAD NATIONAL PANCREAS TRANSPLANT UNIT (NSW) 2011 2012 Number of patients included on the waiting list for the first time in the course of the year 40 85 Total number of patients ever active on the waiting list during the year 76 128 Number of patients awaiting a transplant (only active candidates) on 31st December 43 85 Number of patients dead while on the waiting list during the year 3 2 [22]