Donation & Transplantation Interprovincial Programs Report

Transcription

1 Donation & Transplantation Interprovincial Programs Report Donation & Transplantation Interprovincial Programs Report

2 9-214 TERMINOLOGY & USE OF DATA A glossary of terms can be found in Appendix 1. Extracts of the information in this report may be reviewed, reproduced or translated for educational purposes, research or private study but not for sale or for use in conjunction with commercial purposes. Any use of the information should be accompanied by an acknowledgement of Canadian Blood Services as the source. Any other use of this publication is strictly prohibited without prior permission from Canadian Blood Services. Canadian Blood Services assumes no responsibility or liability for any consequences, losses or injuries, foreseen or unforeseen, whatsoever or howsoever occurring, which might result from the implementation, use or misuse of any information or recommendations in this report. This report contains recommendations that must be assessed in the context of a full review of applicable medical, legal and ethical requirements in any individual case. Production of this report has been made possible through a financial contribution from Health Canada, and the Provincial and Territorial governments. The views expressed herein do not necessarily represent the views of the Federal, Provincial or Territorial governments. Canadian Blood Services 18 Alta Vista Drive Ottawa, Ontario K1G 4J5 Canada info@blood.ca Comments or Questions? Questions or comments are welcome and can be sent to transplantregistry@blood.ca. All suggestions will be considered for inclusion in future reports. On the cover Left: The Woolfsmith family (Jennifer (mother), Daniel (father not pictured) and son Owen) from Calgary are passionate advocates for organ donation. Several years ago, when their three-year-old daughter, Mackenzy Woolfsmith, passed away due to a severe head injury, her parents donated her organs, and saved four lives. Top: Reg Parker is a double lung and liver transplant recipient who was listed on the National Organ Waitlist in March 214. Bottom: Sherry Provis and Peter Carruther; Sherry was an incompatible donor to her father, Peter, but together they registered in the Kidney Paired Donation registry (LDPE at the time) and in November of 21 the pair was part of a six-pair kidney exchange chain. Right: Arnold Dysart, was the first beneficiary of the HSP program. Back in 1993, he received a kidney from his brother, but after 17 years, the organ failed and a second transplant was needed. After spending three years on the wait list, Mr. Dysart finally received a kidney through the HSP program in the spring of 214. Donation & Transplantation Interprovincial Programs Report i

3 ii Donation & Transplantation Interprovincial Programs Report

4 EXECUTIVE SUMMARY Canadian Blood Services is pleased to release the Donation and Transplantation Interprovincial Programs Report which summarizes data for the Kidney Paired Donation (KPD) program, the Highly Sensitized Patient (HSP) program and the National Organ Waitlist for the years The publication of this information is an expansion of the KPD Program Data Report to include data on all the interprovincial organ listing and sharing programs at Canadian Blood Services. These data were selected to describe the activity of the Canadian Organ Donation and Transplantation Network (CODTN) in service to transplant candidates and donors participating in the KPD, HSP Programs and the NOW. It also may be used to identify current barriers and other issues that require resolution so that opportunities are maximized for low immunological risk transplants and greater equity may be realized for those within the Canadian donation and transplantation landscape. Over the past 6 years, the KPD Program has seen a gradual increase in enrollment of new registered pairs, non-directed anonymous donations and transplants performed. However, to maximize transplant opportunities within the KPD Program, it is imperative to explore strategies that will support increased registration rates and overall pair participation. In addition, the median time from the time patients are informed of a match to chain completion has increased from 111 days (29 213) to 139 days in 214. As chains are less likely to be delayed or to collapse if surgeries can be scheduled quickly after match proposals, the exploration of system efficiencies to improve the time to transplantation will also contribute towards maximizing transplant opportunities from the program. Transplantation through the KPD Program continues to demonstrate excellent short-term outcomes and low rejection rates. The Highly Sensitized Patient (HSP) program represents the first national deceased kidney donor organ sharing agreement for Canada. These-highly sensitized patients make up to 25% of the waitlists but historically received <5% of the transplants. However, with the introduction of the KPD, HSP programs and standardized provincial allocation policies giving highly sensitized patients additional allocation priority, there has been a gradual reduction of this disadvantage. Since its inception in November of 213, the HSP program facilitated 63 transplants for highly sensitized patients; the majority of these transplants occurred within the last six months of 214, aligning with the participation of the larger provinces. Integral to this program is the interprovincial cooperation; this has resulted in 28 donations crossing provincial boundaries. Since going live in June of 212, the National Organ Waitlist (NOW) has been the single national point of reference for listing of all heart, lung, liver, and pancreas transplant patients, as well as most multi-organ patients. As each organ community considers their future in using the full suite of services available through the CTR (listing, matching, allocation, offering, outcome monitoring), what currently exists as real-time waiting lists only will transition to much more fulsome information on the disposition of every organ from every living and deceased donor in Canada. Waiting list numbers across all non-kidney groups have remained relatively stable over the 3 year window of this report, indicating the need to continue to seek out new and creative mechanisms for increasing donation opportunities across Canada. Donation & Transplantation Interprovincial Programs Report iii

5 TABLE OF CONTENTS TERMINOLOGY & USE OF DATA... I EXECUTIVE SUMMARY... III TABLE OF CONTENTS... IV 1. INTRODUCTION DATA SOURCES ACKNOWLEDGEMENTS KPD PROGRAM KPD PROGRAM SUMMARY KPD CANDIDATES, RECIPIENTS AND DONORS... 5 Age & Gender... 5 Blood Group... 6 Antibody Levels MATCH CYCLE STATISTICS... 9 Chain Length and Time to Completion... 9 Match Declines Chain completions TRAVEL OUTCOMES Program Performance Recipient Outcomes HIGHLY SENSITIZED PATIENT PROGRAM HSP PROGRAM SUMMARY HSP CANDIDATES... 2 HSP Allocation Offer Declines HSP Thresholds and General Ledger Recipient Outcomes NATIONAL ORGAN WAITLIST (NOW) HEART LUNG LIVER APPENDIX 1: GLOSSARY APPENDIX 2: MATCHING ALGORITHM FOR KPD APPENDIX 3: ADDITIONAL DATA FOR KPD PROGRAM KPD PROGRAM SUMMARY KPD CANDIDATES, RECIPIENTS AND DONORS Age & Gender iv Donation & Transplantation Interprovincial Programs Report

6 Blood Group HLA Antibody Levels MATCH CYCLE STATISTICS Chain Length and Time to Completion Travel Outcomes APPENDIX 4: HSP MATCHING ALGORITHM APPENDIX 5: ADDITIONAL DATA FOR HSP PROGRAM DECEASED DONORS APPENDIX 6: ADDITIONAL INFORMATION FOR NOW SUMMARY Donation & Transplantation Interprovincial Programs Report v

7

8 1. INTRODUCTION 1.1 DATA SOURCES Data for program activities has been extracted from the Canadian Transplant Registry. This is the information technology (IT) system developed and maintained by Canadian Blood Services in which patient data is stored and the matching algorithms are run. Additional data has also been provided directly by the provincial Living Kidney Donation and Transplant Programs. Unless otherwise stated, data presented is for the period of ACKNOWLEDGEMENTS Canadian Blood Services acknowledges, with gratitude, the commitment of the Kidney Transplant Advisory Committee (formerly the National Kidney Registries Advisory Committee), the Living Donation Advisory Committee, the National HLA Advisory Committee, the Organ Donation and Transplantation Executive Advisory Committee, and those whose advice supports the continued growth and achievements of the KPD, HSP and NOW Programs. These programs remain indebted to the administrators, physicians, surgeons, transplant coordinators and allied health professionals of the Organ Donation Organizations and Transplant Programs, for their efforts and collaboration. Their commitment to success and excellence has driven these accomplishments for transplant recipients in Canada. Donation & Transplantation Interprovincial Programs Report 1

9 2. KPD PROGRAM All provinces have been participating in the Kidney Paired Donation (KPD) Program since November 21. The goal of the KPD program is to identify and facilitate kidney transplant opportunities for end stage renal disease (ESRD) patients who have a willing but incompatible living donor. Matches between candidate and donor records in the Canadian Transplant Registry (CTR) are generated as groups or chains of donor exchanges. Match Cycles are currently run three times a year to identify compatible matches. In December 214, the Living Donor Paired Exchange Program was renamed and is now referred to as the Kidney Paired Donation Program. 2.1 KPD PROGRAM SUMMARY Since the start of the program until the end of 214, 2 match cycles have been run. The first transplants from these matches were performed in June 29. From these match cycles, this program had resulted in 272 transplants of candidates registered with the program, as well as 65 transplants of patients who were on local kidney waitlists for a total of 337 transplants. Table 1.1: KPD Program Activity Total Number of Match Cycles 2 Pairs Registered 67 Candidates Registered* 618 NDADs Registered 81 Transplants Completed 337 Candidates Transplanted 272 Wait List Transplants 65 NDADs Donated 65 *A candidate may have several donors and each would be registered in the system as a unique pair The KPD Program is led and managed by Canadian Blood Services in collaboration with the provincial Living Donation and Transplant Programs across the county under shared operating guidelines, policies, processes and procedures. 2 Donation & Transplantation Interprovincial Programs Report

10 There are two general types of donor exchange formats. The N-Way Exchange involves pairs where the donor of the last pair must match the candidate of the first pair. During , 18 transplants were completed through 37 closed chains of exchanges among 2, 3, 4, and 5 pairs. Figure 1.1: Chain Types & Transplants Completed in KPD Program The Domino Chain has been the most common format used and has resulted in the most number of transplants. It starts with a non-directed anonymous donor (NDAD) who donates to the candidate of an incompatible pair. The chain ends by having the donor of the last pair donate to a patient on the waitlist of the local transplant program where the NDAD originated. There were 229 transplants completed during from 65 domino chains of 1 to 5 transplants each. Donation & Transplantation Interprovincial Programs Report 3

11 Figure 1.2: Transplants by Chain Type by Year Transplant Proposed Domino Closed The program has seen a steady increase of registered candidate-donor pairs since 29. Figure 1.3: Registered Pairs and NDADs vs. Registry Transplants by Year of Match Cycle 3 Registered Pairs Transplants NDADs Donation & Transplantation Interprovincial Programs Report

12 2.2 KPD CANDIDATES, RECIPIENTS AND DONORS AGE & GENDER The age of candidates ranged from 1 to 77 years of age, with a mean age of 47.7 years. Adults aged 4 to 69 made up 72.5% of the registered candidate population and received 77.4% of the total transplants. Pediatric patients ( 19 years of age) made up 2.3% of all registered candidates and 4% of all transplants. Seventy-one percent of pediatric registered candidates have been transplanted to the end of 214. Donors were most commonly adults between the ages of 5 and 59 and this age range represented 29.4% of the registered donors. Only 9.4% of registered donors were younger than 29 and only.4% of registered donors were aged 7 or older. Figure 1.4: Age of Registered Recipients and Donors Registered Donors Registered Recipients Over all age ranges, 46.9% of transplant candidates were male and 53.1% were female. Registered donors were 58.1% female and 41.9% male. NDADs are represented in the ratio 55.6% female vs. 44.4% male. Donation & Transplantation Interprovincial Programs Report 5

13 Table 1.2 Transplanted Recipients by Age and Gender, , n (%) Registered Recipients Waitlist Recipients Total Female Male Total Female Male Not specified All Ages 272 (1) 148 (54) 124 (46) 65 (1) 13 (2) 29 (45) 23 (35) 19 1 (4) 3 (1) 7 (3) 4 (6) 1 (2) 1 (2) 2 (3) (8) 7 (3) 15 (6) 3 (5) () 2 (3) 1 (2) (1) 14 (5) 12 (4) 4 (6) () 2 (3) 2 (3) (25) 48 (18) 19 (7) 17 (26) 2 (3) 6 (9) 9 (14) (28) 4 (15) 35 (13) 21 (32) 5 (8) 1 (15) 6 (9) (24) 35 (13) 31 (11) 14 (22) 4 (6) 8 (12) 2 (3) 7+ 6 (2) 1 () 5 (2) 2 (3) 1 (2) () 1 (2) BLOOD GROUP ABO blood grouping is a critical factor in identifying compatible matches between donors and candidates, as transplants between incompatible blood groups will most certainly result in organ rejection. ABO O candidates are over represented in the registry compared to their representation in the general population, due to their requirement for an ABO O donor. Blood group O candidates made up 58.3% of all registered candidates. Despite preferential blood group O donor to blood group O recipient matching, they still received only 36.2% of the transplants; only 32.8% of blood group O candidates received a transplant, compared with 55.1% to 66.7% (58.5% overall) of the other blood group candidates. Blood group O candidates also take the longest time to match. For those that received a transplant, it took 316 days on average to receive their final match proposal*, compared to 239 days for group AB, 194 days for group A and 27 days for group B. *This time interval represents the date of the first match cycle of participation to the date of the match proposal that ultimately resulted in a transplant. 6 Donation & Transplantation Interprovincial Programs Report

14 Table 1.3: Total Transplants Completed Between Donors and Recipients of Compatible Blood Groups for Years Donor Type Recipient Type Count (Percent of total) A A % A AB 4 1.2% AB AB % B B % B AB.% O A 1.3% O B 9 2.7% O AB.% O O % A B 1.3% Total 337 1% ANTIBODY LEVELS Some candidates are incompatible with their registered donors (and other donors) due to antibodies to specific markers in the donor HLA antigens. These antibodies may form after exposure to foreign HLA antigens through previous transfusions, previous transplantations or pregnancies. They can be associated with high rates of kidney rejection or decreased longevity of the transplant. The percentage of the general population to which a candidate has antibodies is estimated as calculated panel reactive antibodies or cpra. A candidate with a higher c-pra will be incompatible with more donors. Candidates with a cpra of greater than or equal to 97% are the most difficult-to-match population in the Registry. Although representing 31% of all candidates since registry inception, registered candidates in this c-pra category have received only 1.3% of the transplants. Conversely, those with a c-pra of 95-96% were transplanted at rates comparable to their prevalence in the candidate population. Donation & Transplantation Interprovincial Programs Report 7

15 Figure 1.5: Proportion of Candidates Registered in KPD Program 29 to 214 by cpra category 6% 1% - 79% 8% - 94% 95% - 96% 97% 5% 4% 3% 2% 1% % HLA antibody testing is repeated several times per year as antibody formation is a dynamic process and the antibody profile may be frequently changed/updated. Rarely, a new donorspecific antibody (DSA) can form between the time a match cycle is run and the subsequent confirmatory testing. Overall however, once a match has been approved by the HLA laboratory, the percentage of subsequently unexpected positive confirmatory crossmatches or newly discovered DSA remains very rare and is not a major contributor to chain breakdown. Table 1.4: Percentage of Unexpected Positive Crossmatches/DSA Category Number of actual crossmatches performed Number of unexpected actual positive FCXM and/or new DSA Percent of unexpected positive FCXM and/or new DSA *FCXM - Flow Crossmatch % 6% 1% 2% 5% 8 Donation & Transplantation Interprovincial Programs Report

16 2.3 MATCH CYCLE STATISTICS Chains are rated based on match points attributes (refer to Appendix 2) and the group of chains with the highest total points is proposed to move forward. Incompatible pairs who are not matched in a given match cycle and agree to remain in the Registry are carried forward into the next match cycle. CHAIN LENGTH AND TIME TO COMPLETION KPD Program s target is to complete a chain of transplants within 12 days from the time of chain proposal. For the 3 match cycles run in 214, the Program completed 4.% of chains within this time frame and 7.% within 15 days. Compared to match cycles run in 5 prior years, the chain completion times for 214 have been slightly longer: from 29 to 213 the Program completed 48.2% of chains within 12 days and 74.7% within 15 days. Table 1.5: Chain Length and Median Time to Completion Number of Candidates in Chains N-Way Chains 2 (Paired Exchange) Number of Chains Completed to 213 Average Number of Median Time to Completion Chains Median Time to in Days (Interquartile Completed Completion in Days Range) per year (Interquartile Range) (12-152) (81-138) ( ) (76-165) ( ) ( ) ( ) ( ) All N-ways ( ) (92-164) Domino Chains (89-122) 2 1 (89-144) (7-125) (96-137) (97-147) (97-123) ( ) ( ) All Dominos (92-153) (97-142) All Chains (97-153) (96-151) The information represented here reflects actual chain completions (as opposed to planned chain completions). One 3-pair domino chain from 21 (resulting in only one transplant) has been omitted from these results. Donation & Transplantation Interprovincial Programs Report 9

17 Figure 1.6: Median Time to Completion (in days) by Year and Chain Length 2-Pair chains/pe 3-Pair chains 4-Pair chains 5-Pair chains Donation & Transplantation Interprovincial Programs Report

18 MATCH DECLINES Although there were more declined transplants in 214 relative to previous years at 28, the reasons for which these transplants were declined are proportionally analogous to results from previous years, with medical issues accounting for approximately 43% of declined transplants in 214 and among the average of declined transplants over the past five years. Table 1.6: Reasons for Match Declines by Year Year Total Avg Reason Category* Medical Total Non- Surgical/ HLA Medical Anatomical Count % 25.% 8.3% 58.3% 8.3% 1.% Count * % 33.3% 33.3% 33.3%.% 1.% Count % 5.% 2.% 1.% 2.% 1.% Count * % 55.% 25.% 1.% 1.% 1.% Count % 42.9% 21.4% 25.% 1.7% 1.% Count % 42.7% 22.% 25.6% 9.8% 1.% Count % 42.6% 22.2% 25.9% 9.3% 1.% Year of transplant decline is based on main match cycle dates. * One 213 transplant was declined for both medical and non-medical reasons, and is represented under both reason categories. One of the scheduled transplants in 211 was declined for non-medical reasons by both the donor and the recipient, and is counted twice in that category. In an attempt to reduce the amount of medical declines, the Living Donation Advisory Committee has established a Kidney Paired Donation Protocol for Participating Donors 1 which will be used, starting in 215, by Living Donation Programs to assess all donors wishing to enroll in the Program. As well, the actual HLA crossmatch performed before surgery may indicate that the candidate has a new antibody incompatibility to the donor which makes the transplant likely to be rejected, and therefore will cause a collapse of all or part of the chain. 1 Donation & Transplantation Interprovincial Programs Report 11

19 CHAIN COMPLETIONS Of the 48 chains that were proposed in 214, 2 chains were completed, with 19 (39.6%) being fully completed and an additional 3-pair domino chain completing two of the three transplants. Four of the remaining chains that were not completed as proposed were repaired. Overall, 28 (54.5%) of proposed chains in 214 collapsed due to match declines and could not be repaired. The total number of successful transplants and chains in 214 was higher than the averages of the previous five years (54.2 and 16.6, respectively); however, given the general trend of increasing totals over this period, the totals for 214 were lower than would be expected had these trends continued. As the program matures, monitoring the proportion of successful transplants and chains is critical to ensuring ongoing program success. Table 1.7: Transplant and Chain Completion Rates, KPD Transplants KPD Chains Year Successful Count (%) Cancelled Count (%) Total Count (%) Successful* Count (%) Collapsed, Not repaired^ Count (%) Total Count (%) (62.5%) 15 (37.5%) 4 (1%) 8 (72.7%) 3 (27.3%) 11 (1%) 47 (49.%) 49 (51.%) 96 (1%) 17 (68.%) 8 (32.%) 25 (1%) 58 (54.2%) 49 (45.8%) 17 (1%) 15 (6.%) 1 (4.%) 25 (1%) 61 (59.2%) 42 (4.8%) 13 (1%) 2 (69.%) 9 (31.%) 29 (1%) 8 (53.3%) 7 (46.7%) 15 (1%) 23 (6.5%) 15 (39.5%) 38 (1%) 66 (4.5%) 97 (59.5%) 163 (1%) 2 (45.5%) 24 (54.5%) 44 (1%) Total Average (51.1%) 322 (48.9%) 659 (1%) 13 (59.9%) 69 (4.1%) 172 (1%) 54.2 (54.6%) 45 (45.4%) 99.2 (1%) 16.6 (64.8%) 9. (35.2%) 25.6 (1%) *Partially-completed chains in 21 (1), 211 (2) and 214(1) have been included under successful chains, as KPD pairing resulted in one or more transplants as part of these chains. ^Chains that were not completed as proposed but were later repaired and completed have not been counted among collapsed chains. 12 Donation & Transplantation Interprovincial Programs Report

20 2.4 TRAVEL Although the CTR program assigns points to matches between donors and candidates in the same city in an attempt to reduce the number of donors needing to travel, for the matches resulting in transplants in 214, 38% percent resulted in inter-provincial travel and 9% resulted in intra-provincial travel for either the donor or the candidate. Compared to the period , this represents a reduction in inter-provincial travel (52% of transplants occurring over this period required either the donor or the recipient to travel to another province) but an increase in intra-provincial travel (5% of transplants occurring over this period required either the donor or the recipient to travel to another city). Figure 1.7: Proportion of KPD Participants Travelling for Transplantation 1% 9% 8% 7% 6% 5% 4% 3% 2% 1% % Interprovincial Travel: Donor Interprovincial Travel: Recipient Intraprovincial Travel (Donor/Recipient) Travel Not Required Avg Donation & Transplantation Interprovincial Programs Report 13

21 2.5 OUTCOMES PROGRAM PERFORMANCE There have been 272 patients transplanted through the KPD program with an additional 65 candidates transplanted outside the program. Of the 12 patients who have not yet been matched 48% were new to the registry in 214 and 64% were added to the registry in the past two years. Only 21% of the active candidates were enrolled in the registry prior to 212. Approximately 29% of the candidates who were not transplanted through KPD and were no longer active in the program received a transplant outside of KPD, with only 26% of KPD candidates having withdrawn without receiving a transplant. Table 1.8: Candidate Activity for KPD Program All Years Candidates Transplanted through KPD Program Inactive Candidates by Year of Most Recent Match Cycle Candidates transplanted Outside KPD Program Candidates Active in MC2 by year of first match cycle RECIPIENT OUTCOMES A minimal set of data on outcome information is reported at one month and one year postsurgery for both donors and recipients. As the national transplant data system evolves so will the ability to provide a robust analysis of all outcomes in Canada including the comparator groups as well as the subset of KPD Program patients. Of the transplants resulting from match cycles for which outcome information is available, all donors and transplant recipients who had reached one month from the date of the transplant were alive, as were all donors and 99.6% of transplant recipients who had reached one year from the transplant date. 14 Donation & Transplantation Interprovincial Programs Report

22 Table 1.9: One Month Recipient and Graft Outcomes for Recipients who Reached One Month Post-Transplant, Recipients Waitlist Recipients Total Patient Survival 268 1% 64 1% 332 1% Graft Survival % 64 1% 33 99% Rejection Episodes 15 6% 4 6% 19 6% Data available for 332 recipients (rejection information unavailable for one registered recipient). More detailed data regarding antibody mediated and cellular rejection will be collected for future reports. Donation & Transplantation Interprovincial Programs Report 15

23 3. HIGHLY SENSITIZED PATIENT PROGRAM The Highly Sensitized Patient (HSP) program represents the first national deceased kidney donor organ sharing agreement for Canada. Patients with past exposure to foreign tissue through pregnancy, past transplants, and blood transfusions may have high levels of antibodies making it difficult to find suitably matched donors. These-highly sensitized patients make up to 25% of the waitlists and historically within local allocation algorithms received <5% of the transplants. However, with the introduction of the KPD, HSP programs and standardized provincial allocation policies giving highly sensitized patients additional allocation priority, there has been a gradual reduction of this disadvantage. The HSP program operationalizes a national agreement to share donor kidneys from anywhere in the country to a suitably matched transplant candidate with a calculated Panel Reactive Antibody (cpra) level of 95%. The HSP program began in October 213 with a launch in Saskatchewan and Manitoba, becoming fully implemented in all provinces as of October HSP PROGRAM SUMMARY Given the staggered implementation of provinces joining the HSP program, transplant numbers were relatively slow to start. Monthly activity increased dramatically starting in June 214, as the larger provincial programs joined. Figure 2.1: HSP Candidate Pool Since Inception Values shown represent count of active HSP patients at start of month Donation & Transplantation Interprovincial Programs Report

24 Figure 2.2: Donation & HSP Transplantation Activity Over Time Donor Cases HSP Offers HSP Transplants Nov Dec Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov Dec N D J F M A M J J A S O N D Total Donor Cases HSP Offers HSP Transplants Interprovincial Intraprovincial Donor Cases: Number of donor cases participating in the HSP program for which allocation was run, by OPO of donor HSP Offers: Number of offers made to highly sensitized kidney patients, as a result of the HSP program HSP Transplants: Number of transplants to highly sensitized kidney patients, as a results of the HSP program (Non-Intended Recipient Transplants are excluded) Interprovincial: Number of interprovincial transplants to highly sensitized kidney patients, as a result of the HSP program Intraprovincial: Number of intraprovincial transplants to highly sensitized kidney patients, as a result of the HSP Program HSP activity data is also reported by the province of residence of the recipient using provincial healthcare numbers. Displayed in this manner, it includes transplantation activity for provinces Donation & Transplantation Interprovincial Programs Report 17

25 that do not have a surgical transplant program such as New Brunswick, Prince Edward Island, Newfoundland, and the Northwest Territories. As of the end of 214, no transplants have occurred for patients from Prince Edward Island or the Northwest Territories, but every other province has seen at least one patient benefit from this program during only 14 months of operation. The national community also routinely monitors how many transplants occur as a result of interprovincial versus intra-provincial sharing. Intra-provincial transplants are logistically easier, generally cost less to carry out, and tend to occur more often in the larger provinces that have higher donor and transplant candidate numbers. Figure 2.3: Donation & HSP Transplantation Activity by PHN/Home Province 2 Donor Cases HSP Offers HSP Donations BC AB SK MB ON QC NB NS PEI NL Total Donor Cases HSP Offers HSP Donations HSP Transplants Interprovincial Intraprovincial Donor Cases = Number of donor cases participating in the HSP program for which allocation was run, by OPO of donor HSP Offers = Number of offers made to highly sensitized kidney patients, as a result of the HSP program HSP Donations = Number of accepted donation offers to highly sensitized kidney patients as a result of the HSP program, by OPO of donor (includes 2 offers that were accepted but did not result in a transplant) HSP Transplants = Number of transplants to highly sensitized kidney patients as a result of the HSP program (Non-Intended Recipient Transplants are excluded) Inter Provincial = Number of inter provincial transplants to highly sensitized kidney patients, as a result of the HSP program Intra Provincial = Number of intra provincial transplants to highly sensitized kidney patients, as a result of the HSP Program Donor Cases, HSP Offers and HSP Donations are distributed by donor's ODO province HSP Transplants are distributed by recipient's PHN/Home province 18 Donation & Transplantation Interprovincial Programs Report

26 The difficulty of finding a potential match for highly sensitized patients increases as their cpra value increases. Even within the eligible group of cpra of 95 or greater, the vast majority of patients listed have a cpra of 99 or 1%. At 99%, patients have only a 1 in 1 chance that any given donor in Canada would be a match for them and blood group compatible. At 1%, their chances of finding a donor are less than 1 in 1, donors. In a country like Canada, which averages just over 53 deceased donors per year ( timeframe), this highlights the need for national sharing to ensure potential opportunities to find donor organs for these patients are not missed. Figure 2.4: HSP Candidate Participation by cpra cpra 95 cpra 96 cpra 97 cpra 98 cpra 99 cpra 1 Offlist HSP Candidates HSP Candidate Waiting HSP Transplants An additional 2 HSP transplants were provided to non-hsp (non-intended) recipients. Overall, 9% of eligible patients have been transplanted through the HSP program, with transplant rates among patients with cpra scores of 95-97% being at least 3.5 times this overall rate. Almost two-thirds of patients eligible for the program have a cpra rating of 1%, despite these patients comprising less than 1% of the transplants. Lower-cPRA patients account for a disproportionate degree of the program s overall success. Donation & Transplantation Interprovincial Programs Report 19

27 Figure 2.5: HSP Transplants and Candidates cpra 95 cpra 96 cpra 97 cpra 98 cpra 99 HSP Transplants HSP Eligible Candidates Relative Ratio of Transplant Rate for cpra Group to Overall Transplant Rate (9%) cpra HSP CANDIDATES The following figure highlights the composition of the HSP candidates on the national waiting list as of December 31 st, 214. In most instances, the proportions of HSP patients listed by province closely reflect the population proportions; however, in 214 BC was still completing HLA testing on their waitlisted patients, so the overall HSP counts may be somewhat under-represented as of the date of the report. Figure 2.6: HSP Candidate Participation by PHN/Home Province (pmp) % of all Patients waiting (est.)* % 22% 28% (total Atlantic Canada) BC AB SK MB ON QC NB NS PEI NL N = PMP *Estimate for total kidney candidates waiting is based on 214 counts of active-status patients in Canadian Blood Services provincial survey (215). 2 Donation & Transplantation Interprovincial Programs Report

28 PMP values based on Statistics Canada provincial population estimates for 214. HSP ALLOCATION There are 4 tiers of matching and ranking that the HSP algorithm performs to develop a final listing of potential HSP recipients who are compatible with an available deceased donor organ (refer to details in Appendix 4). Step One: Matching on blood group, using the same compatibility rules as any patient requiring a blood transfusion. Step Two: HLA compatibility for patients identified as blood group compatible. Step Three: Further screening of donors based on individual attributes of the patient or the clinical direction of a local program. Step 4: At this point, the HSP algorithm uses agreed upon policies to rank order the remaining matches based on key medically and logistically relevant factors. Figure 2.7 illustrates how many allocations required the use of step 4 and Figure 2.8 details the frequency with which decisions were made using the key medically and logistically relevant factors. Figure 2.7: HSP Matches Found per Donor for which Allocation was Run Number of Matches Found Donation & Transplantation Interprovincial Programs Report 21

29 Figure 2.8: Number of Times a Ranking Tier was the Ultimate Deciding Factor Medical Urgency Kidney-Pancreas Patient Pediatric Patient Same Region ABDR Mismatch (/6) Same Province Days on Dialysis OFFER DECLINES Despite the best efforts of the donation and transplantation teams, offeres are declined. The most common reasons that offers are declined is due to the donor s or recipient s health at the time of the offer, or logistical considerations that prevent an organ from being safely shipped (e.g. flight availability, weather, staffing). Figure 2.9: Reasons offer was declined by transplant team System Correction 4% Prolonged Ischemic Time 11% HLA 1% At Threshold Limit 2% Donor Medical 36% Recipient Suitability 23% Logistics 14% 22 Donation & Transplantation Interprovincial Programs Report

30 Table 2.1: Details of Reasons Offer was Declined by Transplant Team Disposition for Declined Declined Transplanted Locally Not Utilized At threshold limit 2 (2%) 1 1 Donor Medical History 2 (19%) 9 11 Donor Medical: Other 17 (17%) 5 12 Abnormal test results 6 (6%) 2 4 ABO identical donor preferred 1 (1%) 1 Donor age 1 (1%) 3 7 Logistics Related to Transportation and Site Availability 15 (15%) 6 9 Recipient Suitability 24 (23%) 16 8 Multi-organ placement 1 (1%) 1 No suitable recipient 4 (4%) 2 2 Recipient medically unsuitable 5 (5%) 4 1 Recipient unavailable 5 (5%) 4 1 Selected incorrect recipient 9 (9%) 5 4 HLA 8 (8%) 6 2 AFTER organ acceptance due to positive Cross Match (XM) 1 (1%) 1 PRIOR to organ acceptance and due to director review 7 (7%) 5 2 Prolonged Ischemic Time 11 (11%) 4 7 Prolonged CIT 5 (5%) 2 3 Prolonged WIT 6 (6%) 2 4 System Correction 4 (4%) 2 2 Unknown 2 (2%) 2 Total 13 (1%) Declines represented in table above include offers that were declined after the offer was accepted Donation & Transplantation Interprovincial Programs Report 23

31 HSP THRESHOLDS AND GENERAL LEDGER In order to ensure that patients from a specific province would not be disproportionately disadvantaged as a result of organs being shared out of province, a mechanism was developed and proposed by the Kidney Transplant Advisory Committee that would set import and export limits (thresholds) on the number of organs any program would potentially send out versus the number of organs they would receive. These thresholds were determined using 5% of the provincial deceased donation numbers in 21 as a starting point. Table 2.2 shows the threshold levels and the import/export activity for each province or region (Atlantic Canada operates as a single importing region, as they share a single waitlist managed by the transplant program in Halifax). Table 2.2: General Ledger by Province BC AB SK MB ON QC ATL Threshold ±2 ±2 ±1 ±1 ±11 ±7 ±2 Net Balance (as of year-end 214) Imports Exports In Province When a program reaches their upper export threshold, they are no longer obligated to share organs until they have imported enough to bring them back within threshold. The same applies to when a program reaches their upper import threshold. A province will stop receiving organs until they have exported enough to bring them back within threshold. The graphs in Figure 2.1 further illustrate this activity from March to December, 214. By the end of 214, all provinces and regions showed some movement, but only Saskatchewan and Manitoba reached their thresholds for sustained periods of 3 or more months. Threshold activity was monitored and options for addressing the problem of programs remaining at their threshold for extended periods of time were under development at the end of 214. New policy proposals are expected in 215 to address these challenges. 24 Donation & Transplantation Interprovincial Programs Report

32 Figure 2.1: Net Balance Over Time BC AB M A M J J A S O N D -3 M A M J J A S O N D SK 1 MB M A M J J A S O N D -2 M A M J J A S O N D ON QC M A M J J A S O N D -1 M A M J J A S O N D ATL M A M J J A S O N D Donation & Transplantation Interprovincial Programs Report 25

33 Although the thresholds exist to protect provinces from importing or exporting organs above a certain value, they do not prevent making or receiving offers through the CTR. In the case of Saskatchewan and Manitoba, both exceeded their import thresholds during 214. Programs continued to offer organs to them because of the rare opportunity it provided for these disadvantaged patients. One option that is under consideration at the end of 214 is to remove import thresholds altogether, and allow the program to proceed using only export thresholds. RECIPIENT OUTCOMES Very few recipients have reached the one-year post transplant time-point, as this is a new program. As such, insufficient outcome data are available on which to comprehensively report at this time. 26 Donation & Transplantation Interprovincial Programs Report

34 4. NATIONAL ORGAN WAITLIST (NOW) Launched in 212, the National Organ Waitlist (NOW) is a real-time, on-line national listing of patients waiting for heart, lung, liver, pancreas, small bowel and multi-organ transplants. It replaced the paper-based London Health Sciences waitlist. There were a total of 81 heart, lung, and liver transplant patients listed as at December 31, 214. The detailed data for heart, lung and liver is provided below. All data is as at December 31, 214 unless otherwise indicated. (Definitions of the various candidate statuses are provided in Appendix 6). 4.1 HEART 9% High status heart Candidates waiting Figure 3.1: Active Heart Candidate Participation by Status Status 4 1% Status 3.5 5% Status 4S 8% Status 1 52% Status 3 29% Status 2 5% Donation & Transplantation Interprovincial Programs Report 27

35 Figure 3.2: Active Heart Candidates by PHN/Home Province by Status S BC AB NWT SK MB ON QC ATL Figure 3.3: Heart Candidates Listed by Status Over Time S J J A S O N D J F M A M J J A S O N D J F M A M J J A S O N D Donation & Transplantation Interprovincial Programs Report

36 Figure 3.4: Total Heart Transplants by Transplant Centre and Status, S Children s Hospital St. Paul s Hospital University of Alberta Hospital Hospital for Sick Children London Health Sciences Centre Toronto General Hospital U of O Heart Institute* Transplant- Québec QE II Health Sciences Centre BC AB ON QC NS *One additional status 4 patient (not depicted) was transplanted at the Ottawa Hospital rather than the University of Ottawa Heart institute. Figure 3.5: Total Heart Candidates Off-listed* from Canadian Transplant Registry by Reason, Transplanted Deceased Improved Unsuitable - medical *"Other": Duplicate (2), Cancelled (29), and Other (5) Too sick for transplant Patient choice Unsuitable - psychosocial Withdrew consent *Data in CTR is provided by transplant coordinators, transplant program data clerks or provincial ODO programs using data feeds. 36 Other* Donation & Transplantation Interprovincial Programs Report 29

37 4.2 LUNG Figure 3.6: Active Lung Candidate Participation by Status Note: there were no active Status 1T patients as of year-end 214 Status 1 32% Status 2 68% Figure 3.7: Active Lung Candidates by PHN/Home Province by Status Status 1 Status BC AB SK MB ON QC ATL 3 Donation & Transplantation Interprovincial Programs Report

38 Figure 3.8: Lung Candidates Listed by Status Over Time Status 1 Status J J A S O N D J F M A M J J A S O N D J F M A M J J A S O N D Figure 3.9: Total Lung Transplants by Transplant Centre and Status, Status 1 Status Vancouver University of General Hospital Alberta Hospital Transplant Manitoba Hospital for Sick Children St. Joseph s Health Care System Toronto General Hospital Transplant- Québec BC AB MB ON QC Donation & Transplantation Interprovincial Programs Report 31

39 Figure 3.1: Total Lung Candidates Off-listed* from Canadian Transplant Registry by Reason, Transplanted Deceased Too sick for transplant Cancelled Unsuitable - medical Patient choice Improved Other/Duplicate *Data in CTR is provided by transplant coordinators, transplant program data clerks or provincial ODO programs using data feeds. 4.3 LIVER Note: There were no active Status 3F, 4, or 4F patients as of year-end 214. There were 414 patients actively waiting for a liver transplant as of year-end 214 Figure 3.12: Active liver Candidates by PHN/Home Province BC AB SK MB ON NT QC ATL 32 Donation & Transplantation Interprovincial Programs Report

40 Figure 3.13: Liver Candidates Listed by Status Over Time F/4F Other J J A S O N D J F M A M J J A S O N D J F M A M J J A S O N D Figure 3.14: Total Liver Transplants by Transplant Centre and Status, University of Alberta Hospital Hospital for Sick Children London Health Sciences Centre 4F 3F Other Toronto General Hospital Transplant- Québec Vancouver General Hospital QE II Health Sciences Centre AB Ontario QC BC NS Not represented: One status 2 patient at Foothills medical centre (AB) and three patients with unknown statuses at transplantation (2 from TGH, 1 from TQ) Donation & Transplantation Interprovincial Programs Report 33

41 Figure 3.15: Total Liver Candidates Off-listed* from Canadian Transplant Registry by Reason, Transplanted Deceased Cancelled Unsuitable - medical Improved Too sick for transplant Unsuitable - psychosocial Patient choice Other *Other includes Duplicate (6), Created in error (2), and Other (25) *Data in CTR is provided by transplant coordinators, transplant program data clerks or provincial ODO programs using data feeds. 34 Donation & Transplantation Interprovincial Programs Report

42 5. APPENDIX 1: GLOSSARY Term ABO (or Blood Group) ABO Incompatible ABDR antigens Active Algorithm (or Matching Algorithm) Allograft Antibody Antigen Blood Group Calculated Panel Reactive Antibody (cpra) Canadian Transplant Registry (CTR) Candidate (or Transplant Candidate) Candidate-Donor Pair (or Registered Pair) Chain Chain Completion Closed Chain (or N-way Exchange) Collapsed Chain Compatible Match Definition A term used interchangeably with blood group. For example, ABO-O refers to blood group O whereas ABO-B refers to blood group B. A circumstance where the donor and candidate blood groups are NOT compatible. HLA proteins that help determine Donor/Recipient differences. Any donor or candidate record that is ready for matching in the registry. An automated computer program which is used to determine potentially compatible candidate-donor pairs within the KPD program and groups of mutually exclusive chains of matched pairs See Graft. A protein molecule produced by the immune system in response to a foreign body (known as an antigen). A protein on a cell surface (such as those in a donor kidney) which can cause the recipient immune system to react. See ABO. A population-based estimate of the percentage of donors that will be incompatible with a given candidate due to the presence of antibodies. A web-based database for inter-provincial listing of donors and potential recipients and for allocating the donor organs to the recipients. It is operated by Canadian Blood Services and supports the KPD program, the Highly Sensitized Patient (HSP) program for high-cpra kidney transplant candidates and the National Organ Waitlist (NOW) for non-renal transplant candidates. An ESRD patient who needs a kidney transplant and who is registered in the Canadian Transplant Registry (CTR). A transplant candidate and donor who are registered together in the KPD program, with the goal of finding a suitable match for the transplant candidate through a donor exchange. A group of candidate-donor pairs, with or without an NDAD, in which all the candidates are able to get a kidney transplant from a donor in the group and all the donors are able to donate to someone in the group. Chains may be closed (involving only registered pairs) or domino (involving an NDAD and a waitlist recipient). The completion of all transplants proposed as part of a given chain. A chain in which the donor of the last pair must match the candidate of the first pair. A chain that cannot proceed because one or more proposed transplants cannot proceed. A transplant candidate and donor whose ABO and HLA types are compatible for transplantation. Donation & Transplantation Interprovincial Programs Report 35

43 Crossmatch Term Domino Chain Donor Donor-Specific Antibodies (DSA) End Stage Renal Disease (ESRD) Enrolment Date Graft (or Allograft) Interquartile Range (IQR) Incompatible Pair Human Leucocyte Antigen (HLA) HLA Crossmatch HLA Phenotype Kidney Paired Donation (KPD) Program KTAC Matching Algorithm Match Cycle Match Run Definition A test performed in an HLA laboratory to determine the HLA compatibility between a candidate and a potential donor. A chain of donor exchanges that begins with an NDAD and ends with the last donor in the chain donating to a patient on the deceased donor waitlist, waiting for a kidney transplant. A person, either living or deceased, who provides cells, tissues, or organs for transplantation. Recipient HLA antibody or antibodies that match a given donor s HLA antigens. Lack of kidney function to a degree for which a patient requires dialysis or transplant. The date on which a candidate-donor pair is first added to the CTR as part of the KPD program. A transplanted organ, tissue, or cells. In the case of KPD and HSP, a transplanted kidney. A statistical measure of dispersion (variability) based on dividing a data set into quartiles. A transplant candidate and a donor whose blood types and/or HLA tissue types are not compatible for transplant. A kidney transplant from the donor would be rejected by the candidate s antibodies. The antigens on the donor cell surface that may cause the recipient s immune system to react. See also antigen, above. HLA antigens are named in groups, or loci, and identified as: A, B, Cw, DR, DRw, DQA, DQ, DPA, and DP. A test performed in an HLA laboratory to determine the HLA compatibility between a candidate and a potential donor. A detailed description of the HLA antigens in a candidate or donor which is used as a basis for matching donors and recipients. A program operated and managed by Canadian Blood Services in collaboration with the provincial Living Kidney Donation and Transplantation programs. The KPD program matches candidate-donor pairs and NDADs into chains of donor exchanges and works with their Living Kidney Donation and Translant programs to facilitate the completion of all the donations and transplants in the chain. Kidney Transplant Advisory Committee See Algorithm. A period of time beginning on the date the matching algorithm is run to identify a group of mutually exclusive chains from a set group of donorcandidate pairs and NDADs, and ending on the date the last transplant in the last chain is completed. Match cycles can overlap one another in time. The running of the KPD matching algorithm to identify chains of proposed exchanges. Each match cycle will have a main run and may have additional runs (re-runs) using the same group of pairs and NDADs, if required. 36 Donation & Transplantation Interprovincial Programs Report

44 Term N-way Exchange Non-Directed Anonymous Donor (NDAD) Paired Exchange (PE) Proposed Pair/Match Rejection Registered Pair Repaired Chain Terminal Donor Virtual Crossmatch (VXM) Waitlist See Closed Chain. Definition A donor who wishes to donate a kidney to anyone in need and is registered in the KPD program without a paired registered candidate. NDADs allow for domino chains to be proposed. A KPD donor exchange between two registered pairs wherein each recipient receives a kidney from the donor in the other pair. This is equivalent to a 2-way exchange or a closed chain involving only two pairs. A potentially compatible donor and candidate who are matched for transplant by the matching algorithm. An immunological response to the transplanted organ in which the recipient s immune system attempts to destroy the graft, resulting in decreased function. A rejection episode does not necessarily result in allograft loss. See Candidate-Donor Pair. When a matched donor-candidate pair in a chain can no longer proceed to transplant, the KPD Program attempts to repair the chain, if possible, to allow the rest of the matches to continue to transplantation. The last donor in a domino chain whose kidney is transplanted to a recipient from a provincial or local waitlist. The terminal donor surgery is not necessarily the last surgery to occur, as chains may not be done in chronological order. A comparison between candidate antibodies and donor antigens. A positive VXM means that candidate antibody(ies) match the donor antigen(s) with a high risk of organ rejection. A negative VXM means that candidate antibodies do not match the donor antigens with a corresponding lower risk of organ rejection. A list of patients who are qualified and registered by a transplant program and who are waiting to receive an organ transplant. Donation & Transplantation Interprovincial Programs Report 37

45 6. APPENDIX 2: MATCHING ALGORITHM FOR KPD Table A2.1 Matching Points Match points are assigned to matches between donor and candidate records with the following characteristics: Attribute Points Compatible Donor-Candidate match (using ABO, HLA, filters) 1 Highly Sensitized (cpra 8%)* 125 ABO Match: O to O 75 Pediatric Candidate ( 19 years of age) 75 Candidate is Prior Living Donor 75 ABDR /6 Mismatch 75 Dialysis Wait Time (starting at initiation of dialysis) Days/3 Geography: Same City 25 Donor/Candidate Age 3 years 5 ABO Match: A to A, B to B, AB to AB 5 EBV Negative to Negative Match 5 *The cpra threshold for the KPD program was increased to cpra 95% starting in 215 Guiding Principles for Kidney Paired Donation Program The KPD Program policies, procedures, processes and guidelines are developed under these principles: 1. Maximize Transplants primary goal should be to find the greatest number of high quality matches between living donors and candidates. 2. Maximize Logistics to the extent possible, the need for donors or recipients to travel should be minimized. 3. Equity for High Need Patient Groups any candidates who are disadvantaged due to medical or demographic factors should receive additional priority. (e.g., highly sensitized, blood group O, pediatrics, lengthy time on dialysis, etc.). 4. Priority for Higher Quality Matches transplants that are zero mismatch HLA A, B, DR or other clinical criteria considered to be more ideal should receive special priority. 5. Evidence-Based Decision Making all principles adopted and algorithm decisions made should be based on the most current and best quality peer reviewed evidence available. 38 Donation & Transplantation Interprovincial Programs Report

46 MC1 MC2 MC3 MC4 MC5 MC6 MC7 MC8 MC9 MC1 MC11 MC12 MC13 MC14 MC15 MC16 MC17 MC18 MC19 MC2 7. APPENDIX 3: ADDITIONAL DATA FOR KPD PROGRAM 7.1 KPD PROGRAM SUMMARY Figure A3.1: KPD Program Activity by Match Cycle Registered Pairs in the Match Cycle Non-Directed Donors in the Match Cycle Pairs in their First Match Cycle Transplants from Match Cycle Jan Feb May Oct Feb May Aug Nov Mar Jun Oct Feb Jun Oct Feb May Oct Feb Jun Oct Figure A3.2: Transplants Facilitated by KPD Program by Year Transplants by Year of Proposal 5 Year Trend Line (by year of proposal) Transplants by Year of Surgery Donation & Transplantation Interprovincial Programs Report 39

47 Figure A3.3: Candidates & Recipients by Transplant Centre Province * BC AB SK MB ON QC NB NS PEI NL Candidates Transplants % Transpant 61% 37% 38% 38% 41% 31% 29% 32% 5% 43% *These data represent registered recipients only, they do not include waitlist recipients. Figure A3.4: Candidates & Recipients by Transplant Centre Province per million population (PMP), * BC AB SK MB ON QC NB NS PEI NL Candidates PMP Transplant PMP % Transpant 61% 37% 38% 38% 41% 31% 29% 32% 5% 43% *These data represent registered recipients only; they do not include waitlist recipients. 4 Donation & Transplantation Interprovincial Programs Report

48 Figure A3.5: Annual Totals for Active Pairs* per million population (PMP) by Province, All CDN BC & Y AB & NT SK MB ON & NU QC ATL *Totals represent the PMP counts of registered pairs active in each year (i.e., an active pair in 211 that was still active in 212 would be counted in both years, and two or more pairs with the same recipient would be counted separately). Figure A3.6: Annual Totals for Transplants* per million population (PMP) by Province of Recipient, All CDN BC & Y AB & NT SK MB ON & NU QC ATL *total transplants includes transplants to waitlist recipients. Donation & Transplantation Interprovincial Programs Report 41

49 Table A3.1: System Performance for Matches Transplanted and Proposed Chains Completed Matches* KPD Total Unique Proposed Matches Proposed Matches Transplanted % of Proposed Matches Transplanted % 56% 6% 63% 61% 47% Chains Proposed Chains Completed Chains^ % of Proposed Chains Completed 59% 68% 6% 69% 61% 45% *Refers to transplants involving registered candidates only ^Includes partially-completed chains Figure A3.7: Chain and Match Pair Completion Proportion by Year of MC Unique Proposed Matches Proposed Matches Transplanted % of Proposed Chains Completed % of Proposed Matches Transplanted % 7% 6% 5% 4% 3% 2% 1% % 42 Donation & Transplantation Interprovincial Programs Report

50 7.2 KPD CANDIDATES, RECIPIENTS AND DONORS AGE & GENDER Table A3.2: Age Range of Donors & Non-Directed Anonymous Donors Registered Donors Non-Directed Anonymous Donors Total Female Male Total Female Male All Ages 67 (1%) 391 (58%) 279 (42%) 81 (1%) 45 (56%) 36 (44%) Aged (9%) 29 (4%) 34 (5%) 3 (4%) 2 (2%) 1 (1%) Aged (2%) 78 (12%) 53 (8%) 11 (14%) 5 (6%) 6 (7%) Aged (26%) 113 (17%) 62 (9%) 21 (26%) 1 (12%) 11 (14%) Aged (29%) 115 (17%) 82 (12%) 28 (35%) 21 (26%) 7 (9%) Aged (15%) 55 (8%) 46 (7%) 15 (19%) 7 (9%) 8 (1%) Aged 7+ 3 (%) 1 (%) 2 (%) 3 (4%) (%) 3 (4%) 5 registered donors were active across two age categories; these cases were counted under the category of their most recent match cycle (i.e. in the older age group). Figure A3.8: Age Range of Candidates, Transplant Recipients & Waitlist Recipients Candidates Registered Transplant Recipients Waitlist Transplant Recipients Donation & Transplantation Interprovincial Programs Report 43

51 Figure A3.9: Candidates by Age and Gender Female Male 15% 14% 13% 11% 11% 8% 7% 6% 6% 4% 1% 1% 1% 1% % 14% 12% 1% 8% 6% 4% 2% % Percentage figures refer to proportion of total candidates Figure A3.1: Transplant Recipients by Age and Gender Registered Female Waitlist Female Registered Male Waitlist Male Waitlist Sex unknown 26% 28% 24% % 7% 8% 2% Percentage figures refer to proportion of total transplant recipients for total in age group 44 Donation & Transplantation Interprovincial Programs Report

52 Figure A3.11: Registered Donors by Age and Gender Female Male 18% 16% 12% 11% 1% 8% 8% 7% 4% 5% % 1% % 18% 16% 14% 12% 1% 8% 6% 4% 2% % Percentage figures refer to proportion of total donors BLOOD GROUP Figure A3.12: ABO of Candidates Through Time Donation & Transplantation Interprovincial Programs Report 45

53 Table A3.3: KPD Recipients Transplanted by Blood Group, n (%) Registered Recipient Transplants ABO Distribution in Candidate Pool % of ABO Group Transplanted Total A AB B O (33) 4(1) 57(21) 12(44) (27) 6(1) 87(14) 36(58) 44% 55% 67% 66% 33% Waitlist Transplants 65 38(58) 15(23) 1(15) 2(3) Figure A3.13: Median Wait Time in Days [with IQR] from First Match Cycle Start Date to Transplant Date by Blood Group, (n=272) [Interquartile range] O 29 [ ] B 16 [19-213] AB 135 [ ] A 141 [ ] Donation & Transplantation Interprovincial Programs Report

54 HLA ANTIBODY LEVELS Figure A3.14: Comparisons of Recipients Time (in Months) on Dialysis Prior to Transplant 8% Registered Recipients 214 Registered Recipients Waitlist Recipients 214 Waitlist Recipients 7% 6% 5% 4% 3% 2% 1% % 1 to to to Figure A3.15: Proportion of Transplant Recipients in Each Months-on Dialysis Category by cpra, % 1% - 5% 51% - 94% 95% - 96% 97% % 18% 2% 36% 43% 25 to 36 15% 1% 22% % 14% 13 to 24 15% 18% 26% 21% 11% 1 to 12 16% 21% 8% 14% 7% 35% 33% 24% 29% 25% % 2% 4% 6% 8% 1% Donation & Transplantation Interprovincial Programs Report 47

55 Figure A3.16: cpra Candidates Through Time Table A3.4: cpra Categories of Candidates and Transplant Recipients, , n (%) Registered Recipient Transplants cpra Distribution in Candidate Pool % of cpra Group Transplanted % 1% - 79% 8% - 94% 95% - 96% 97%+ 55(2) 125(47) 5(18) 14(5) 28(1) 117(19) 212(34) 72(12) 27(4) 19(31) 47% 59% 69% 52% 15% Waitlist Transplants 39(6) 2(31) 2(3) 1(2) 3(5) Table A3.5: Blood Group of Donors to Blood Group of Registered Recipients Transplanted, , n (%) A to A A to AB AB to AB B to B O to A O to B O to O Total 9(33) 3(1) 1() 48(18) 1() 9(3) 12(44) Donation & Transplantation Interprovincial Programs Report

56 Domino Closed Number of Donors (Count) 7.3 MATCH CYCLE STATISTICS Figure A3.17: Donor Activity and Number of Match Cycles in Which They Participated, Active, Not Proposed Withdrawn, Never Proposed Proposed, Withdrawn Number of Match Cycles in which Donor was Active Active, Not Proposed: Donor was active in last match cycle (MC 2) but has never been included in a proposed chain Withdrawn, Never Proposed: Donor was not active in last match cycle (MC 2) but has never been included in a proposed chain Proposed, Withdrawn: Donor was not active in last match cycle (MC 2) but has been included in at least one proposed chain CHAIN LENGTH AND TIME TO COMPLETION Figure A3.18: Median Days to Chain Completion by Chain Type and Length, [72-15] [82-16] [ ] [ ] All Closed 133 [ ] [81-137] 3 13 [9-139] 4 11 [97-136] [ ] All Domino 119 [96-145] All Chain Types 124 [96-152] [Interquartile range] Note: this is based on actual chain length rather than chain length when originally proposed Donation & Transplantation Interprovincial Programs Report 49

57 Days to Chain Completion Days Days to Chain to Chain Completion Figure A3.19: Number of Days to Chain Completion by Type of Chain for Years Note: this is based on actual chain length rather than chain length when originally proposed Closed Closed Bars represent individual completed chains Domino Domino Figure A3.2: Days to Completion by Chain Length for Years Note: this is based on final chain length transplanted rather than chain length when originally proposed Pairs 3 Pairs 4 Pairs 5 Pairs Bars represent individual completed chains 5 Donation & Transplantation Interprovincial Programs Report

58 Figure A3.21: Median Days (IQR) from Enrolment and Date of Proposal to Date of Surgery for NDAD versus Registered Donors Who Donated, Figure A3.22: Position in Completed Domino Chains of Donors by ABO Group For Years O 77 2 B 34 9 AB 14 A 53 4 Non-Terminal Terminal TRAVEL Table A3.6 Counts of All Travelers in Transplanted Matched Pairs, Interprovincial Intraprovincial Total Travel Donor NDAD Recipient All Travelers Donation & Transplantation Interprovincial Programs Report 51

59 Table A3.7: Summary of Inter-provincial Transplants Transplant Centre Province BC AB SK MB ON QC NS Donor Out BC to AB to SK to MB to ON to QC to NS to Donor In OUTCOMES Table A3.8: Outcome Results for 332 KPD Recipients Reaching One Month Post-Transplant (Donor Survival 1% (N=332)) Recipients Waitlist Recipients Total Patient Survival 268 1% 64 1% 332 1% Graft Survival % 64 1% 33 99% Rejection Episodes 15 6% 4 6% 19 6% Serum Creatinine Levels (μmol/l)* < % 19 3% 126 4% % 34 53% % % 6 9% 28 9% % 3 5% 1 3% > % 2 3% 11 3% * Recorded creatinine levels ranged from 18 to 683, with a mean of 116 μmol/l and a median of 11 μmol/l (N = 33) Rejection information unavailable for one registered recipient (N = 331). Includes borderline rejection cases. 52 Donation & Transplantation Interprovincial Programs Report

60 Table A3.9: Outcome Results for 313 KPD-registered Recipients One Year Post-Transplant (Donor Survival 1% (N=313)) Recipients Waitlist Recipients Total Patient Survival % 58 1% % Graft Survival 25 98% 58 1% % Rejection Episodes 26 11% 3 5% % Serum Creatinine Levels (μmol/l)* < % 16 28% % % 34 59% % % 5 9% 21 7% % 1 2% 8 3% > % 2 3% 9 3% * Recorded creatinine levels ranged from 29 (pediatric) to 58, with a mean of 112 μmol/l and a median of 17 μmol/l. Rejection information available for 31 recipients, including four of the five cases in which the graft was nonfunctional at one year post-transplant. Includes borderline rejection cases. Donation & Transplantation Interprovincial Programs Report 53

61 8. APPENDIX 4: HSP MATCHING ALGORITHM There are 4 tiers of matching and ranking that the HSP algorithm performs to develop a final listing of potential HSP recipients who are compatible with an available deceased donor organ. Step One: Matching is first done on blood group, using the same compatibility rules as any patient requiring a blood transfusion. Table A4.1: Step One: Blood group Matching Blood Group (ABO) Compatibility If donor blood group is: O A B AB Then recipient blood group can be: O,A,B,AB A, AB B, AB AB Step Two: The second step checks HLA compatibility for patients identified as blood group compatible. Recipient s unacceptable HLA antigens are compared to a donor s HLA antigens to identify recipients that are unlikely to have a positive crossmatch to the donor ( virtual crossmatch ). In this step, potential donor-recipient matches are excluded when the donor has HLA antigens that have been listed in the recipient s record as being incompatible. Step Three: Further screening of donors based on individual attributes of the patient or the clinical direction of a local program occurs at this step. This involves filters based on donor age, donor infectious disease status, and whether or not the proposed donor was declared dead using donation after cardiocirculatory death (DCD). Table A4.2: Step Three: Patient and Transplant Program-Specific Filters Filter Attribute Accept a donor to specified maximum age (<45, <55, <65, no restrictions) Accept a donor above a specified minimum age (>1, <11, >12, >13, >14, >15, >16, >17, >18, no restriction) Accept a donor who has tested positive for Hepatitis B core antibody Accept a donor who has tested positive for Hepatitis C Accept a DCD (donation after cardio-circulatory death) donor 54 Donation & Transplantation Interprovincial Programs Report

62 Step 4: At this point, it is quite common for a donor to have only one or sometimes no matches. However, for cases with two or more potential candidates that are blood group, HLA, and patient-filter matches, the HSP algorithm uses agreed upon policies to rank order the remaining matches based on key medically and logistically relevant factors. Table A4.3: Step Four: Ranking of Matched Recipients Matching/Ranking Attribute Rank Medical urgency (requires prior approval of KTAC sub-committee) 1 Paediatric recipient ( 19 years of age) 2 Recipient is a prior living donor 3 HLA match: The HLA trying for the donor and recipient indicates a zero out of six (/6) mismatch for ABDR antigens Kidney-pancreas patients 5 The donor and recipients are in the same province 6 The donor and recipient are in the same region: West region: BC,AB,SK, MB East region: ON, QC,ATL Time on Dialysis (number of days starting at the most recent initiation of dialysis) All four of the above tiers are examined annually by clinical experts advising Canadian Blood Services on the operations and policies of the HSP program. As policy changes are proposed and endorsed by the national community (including physicians, donation professionals, laboratory professionals, and administrators), these matching and ranking rules used by the Canadian Transplant Registry are updated accordingly. Donation & Transplantation Interprovincial Programs Report 55

63 Age Group Age Group 9. APPENDIX 5: ADDITIONAL DATA FOR HSP PROGRAM Table A5.1: Transplanted Recipients by cpra, Age, and Gender Female Male cpra (%) All All All Recipients < All Ages % of cpra 55% 29% 58% 53% 67% 17% 51% 45% 71% 42% 47% 33% 83% 49% 9.1 DECEASED DONORS Table A5.2: Age and Type of Donor (NDD or DCD) DCD NDD Blood Group A AB B O DCD A AB B O NDD All < All Ages Mean age Note: The results presented here include all donors registered in CTR for whom an HSP allocation was run. 56 Donation & Transplantation Interprovincial Programs Report

64 Figure A5.1: HSP Candidate Participation by Blood Group A AB B O Offlist Transplanted Active Donation & Transplantation Interprovincial Programs Report 57