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United States Organ Transplantation OPTN/SRTR Annual Data Report

2013

U.S. Department of Health and Human Services

Health Resources and Services Administration December 2014

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This publication was produced for the US Department of Health and Human Services (HHS), Health Resources and Services Administration (HRSA), by the Minneapolis Medical Research Foundation (MMRF) and by United Network for Organ Sharing (UNOS) under contracts HHSH250201000018C and 234-2005-37011C, respectively. This report is available at http://srtr. transplant.hrsa.gov. Individual chapters, as well as the report as a whole, may be downloaded. This publication lists non-federal resources in order to provide additional information to consumers. The views and content in these resources have not been formally approved by HHS or HRSA. Listing these resources is not an endorsement by HHS or HRSA. OPTN/SRTR 2013 Annual Data Report is not copyrighted. Readers are free to duplicate and use all or part of the information contained in this publication. Data are not copyrighted and may be used without permission if appropriate citation information is provided.

Suggested Citations Full citation: Organ Procurement and Transplantation Network (OPTN) and Scientific Registry of Transplant Recipients (SRTR). OPTN/SRTR 2013 Annual Data Report. Rockville, MD: Department of Health and Human Services, Health Resources and Services Administration; 2014. Abbreviated citation: OPTN/SRTR 2013 Annual Data Report. HHS/HRSA. Publications based on data in this report or supplied on request must include a citation and the following statement: The data and analyses reported in the 2013 Annual Data Report of the US Organ Procurement and Transplantation Network and the Scientific Registry of Transplant Recipients have been supplied by United Network for Organ Sharing and the Minneapolis Medical Research Foundation under contracts with the US Department of Health and Human Services and Health Resources and Services Administration. The authors alone are responsible for reporting and interpreting these data; the views expressed herein are those of the authors and not necessarily those of the US Government.

contents

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preface ............................... introduction ........................ kidney ................................. pancreas ............................ liver .................................... intestine ............................. heart .................................. lung .................................... economics .......................... deceased organ donation...

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OPTN/SRTR 2013 Annual Data Report

Preface This Annual Data Report of the US Organ Procurement and Transplantation Network (OPTN) and the Scientific Registry of Transplant Recipients (SRTR) is the twenty-third annual report and is based on data pertaining to the period 1998-2013. The title OPTN/SRTR 2013 Annual Data Report reflects the fact that the report covers the most recent complete year of transplants, those performed in 2013. This publication was developed for the US Department of Health and Human Services, Health Resources and Services Administration, Healthcare Systems Bureau, Division of Transplantation, by the SRTR contractor, the Minneapolis Medical Research Foundation (MMRF), and the OPTN contractor, United Network for Organ Sharing (UNOS), under contracts HHSH250201000018C and 2342005-37011C, respectively. As the SRTR contractor, MMRF, through its Chronic Disease Research Group, determined which data to present, conducted the required analyses, created the figures and tables, drafted the text, and designed the document. As the OPTN contractor, UNOS reviewed the draft report and contributed to the content. This report is available at http://srtr. transplant.hrsa.gov. Individual chapters, as well as the report as a whole, may be downloaded.

Overview and Highlights This Annual Data Report includes chapters on kidney, pancreas, liver, intestine, heart, and lung transplantation, a chapter presenting economic data (including data on Medicare payments), and a chapter on deceased donor organ donation. The organ-specific chapters include information on such topics as the waiting list, deceased donor organ donation, living donor organ donation, transplant, donorrecipient matching, outcomes, and pediatric transplant, and provide transplant center maps. When possible, similar data and formats are used for each chapter. However, this is not always possible because some data are not pertinent to all organs.

Graphical presentation of the data is emphasized: more than 350 figures, tables, and maps are included in the various chapters. Graphics are downloadable as slides from http://srtr.transplant.hrsa.gov. The data behind the graphics are downloadable from the same location in a spreadsheet format. Maps in this report present data divided into quintiles. Below is a sample map.

No data

47.3 54.6

84.0

124.2

224.5 148.9

In this example, approximately one-fifth of all data points have a value of 148.9 or above. Ranges include the number at the lower end of the range, and exclude that at the upper end (e.g., the second range here is 54.6 to < 84.0). Numbers in the first and last boxes indicate the mean values of data points in the lowest and highest quintiles, not the minimum and maximum of observed data. Maps by donation service area (DSA) use DSA boundaries in effect at the end of 2013. Some DSAs include noncontiguous areas. If a DSA has no transplant program for a given organ, or no listings during the map’s time frame, it is labeled “No data” on the map and shaded accordingly.

Milestone Dates in the Production of This Report Data were cut: April 2014. Data were analyzed: May 2014.

preface

Methods PRA and CPRA For kidney and pancreas transplant recipients prior to December 1, 2007, panel-reactive antibody (PRA) at the time of transplant is the value of the most recently recorded PRA. If that value is missing, we use the peak PRA value known at the time of transplant. In 2004, the OPTN Recipient Histocompatibility form changed the PRA collection method from overall PRA to Class I and Class II PRA. From 2004 through 2007, we use the maximum of the Class I and Class II values. From December 2007 through October 2009, we incorporate calculated PRA (CPRA) if the value is greater than zero. In this time frame, we use the maximum of measured PRA and CPRA. From October 2009 to present, we use the maximum of CPRA, measured PRA, and allocation PRA. A similar approach is used for PRA and CPRA among kidney and pancreas candidates. For liver, intestine, heart, and lung transplant recipients, PRA at the time of transplant is the value of the most recently recorded PRA. If that value is missing, we use the peak PRA value known at the time of transplant. In 2004, the OPTN Recipient Histocompatibility form changed the PRA collection method from overall PRA to Class I and Class II PRA. In these years, we use the maximum of the Class I and Class II values.

Incidence Incidence of posttransplant outcomes (diabetes, posttransplant lymphoproliferative disorder, etc.) is computed using competing risk methods. Outcomes observations are not censored at death. In prior years, most outcomes were censored at death, providing an artificially increased incidence of the outcome under consideration.

Graft failure Unless otherwise specified, “graft failure” refers to graft failure due to any cause, including death and retransplant. For kidney failure, this also includes return to maintenance dialysis. “Graft survival” similarly refers to the absence of allcause graft failure. Graft failure is computed using competing risk methods.

Half-life Graft half-life and conditional half-life estimates were computed using a “period” method, which is different from the method previously used. In the past, conditional half-life estimates relied on the rarely true assumption of constant hazard after the first posttransplant year, and extrapolated the survival curve to its half-life based on that early hazard. The “period” method constructs a survival curve differently. If the half-life of a cohort in a given year is observed, then the

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survival curve is constructed using the Kaplan-Meier method based on the observed data from this cohort. Otherwise, we construct the survival curve using the data from the cohort for the observed part and “borrow” data from earlier cohorts for the rest. For example, the 2008 half-life estimate for kidney graft survival is based on observed and borrowed data. For patients who underwent transplant in 2008, we have observed 5-year survival data through 2013. We extrapolate this survival curve to its half-life by using the observed sixth-year failure rate of the 2007 cohort as the sixth-year failure rate of the 2008 cohort, the seventh-year failure rate of the 2006 cohort as the seventh-year failure rate of the 2008 cohort, and so on. Conditional half-life estimates are similarly computed, but limited to patients with 1 year of graft survival.

Alive with function For a given year and organ type, counts of recipients alive with function include all recipients of that organ who underwent transplant prior to June 30 of the given year and who have no evidence of graft loss or death. Multi-organ recipients are counted once per organ. A heart-lung recipient, for example, is included in the counts of heart recipients and of lung recipients alive with function. A kidney-alone recipient who underwent transplant in January 2001 and lost graft function in November 2011 is counted as alive with function every year from 2001 through 2011. Recipients who are lost to followup are assumed to be alive with a functioning graft until evidence, usually a death date, contradicts this assumption.

Rates by subgroup When rates are shown by subgroup (i.e., sex, race, primary diagnosis), the numerator and denominator are computed exclusively within those groups. For example, for pretransplant mortality by race group, the numerator for each race group is the number of deaths in that race group during the interval described. The denominator is the total waiting time within each race group in that same time interval. When a characteristic is subject to change over time (e.g., age, PRA), the subgroup variable is updated to use the first known value in a given interval, unless otherwise noted. For example, a waitlisted candidate who was aged 34 years on January 1, 2002, would be included in the 18-34 year age group in 2002, but if that candidate was still listed in 2004, he or she would be included in the 35-49 year age group.

Donor risk index The kidney donor risk index (KDRI) and pancreas donor risk index (PDRI) are measures of donor quality based on donor factors.

data behind the figures can be downloaded from our website, at srtr.transplant.hrsa.gov

OPTN/SRTR 2013 Annual Data Report

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KDRI1 = Exp{–0.0194 ˆ I(age < 18 yrs) ˆ (age – 18 yrs) + 0.0128 ˆ (age – 40 yrs) + 0.0107ˆ I(age > 50 yrs) ˆ (age – 50 yrs) + 0.179 ˆ I(AfricanAmerican) + 0.126 ˆ I(hypertensive) + 0.130 ˆ I(diabetic) + 0.220 ˆ (serum creatitine – 1 mg/dL) – 0.209 ˆ I(serum creatinine > 1.5 mg/dL) ˆ (serum creatinine – 1.5 mg/dL) + 0.0881 ˆ I(cause of death = cerebrovascular accident) – 0.0464ˆ ([height – 170 cm]/10) – 0.0199 ˆ I(weight < 80 kg) ˆ ([weight – 80 kg]/5) + 0.133 ˆ I(DCD) + 0.240 ˆ I(HCV+)} PDRI2 = Exp{–0.1379 ˆ I(female) – 0.03446 ˆ I(age < 20 yrs) ˆ (age – 20 yrs) + 0.02615 ˆ (age – 28 yrs) + 0.1949 ˆ I(creatinine > 2.5 mg/dL] + 0.2395ˆ I(African-American) + 0.1571 ˆ I(Asian) – 0.0009863 ˆ (BMI – 24) + 0.03327 ˆ I(BMI>25) ˆ (BMI-25) – 0.006074 ˆ (height – 173 cm) + 0.2102 ˆ I(cause of death = cerebrovascular accident) + 0.3317 ˆ I(DCD)} where I=1 if the condition is true and I=0, otherwise. Complete versions of these indices also include transplant factors, but the donor-specific indices we show in this report are limited to donor-specific factors. To convert the KDRI to a cumulative percentage scale (i.e., the kidney donor profile index [KDPI]), we used a reference population of all deceased donor kidneys recovered for transplant in the US in 2013. Kidneys recovered en bloc were counted once. 1

Rao PS, Schaubel DE, Guidinger MK, Andreoni KA, Wolfe RA, Merion RM, Port FK, Sung RS. A comprehensive risk quantification score for deceased donor kidneys: the kidney donor risk index. Transplantation. 2009; 88(2): 231-236. 2 Axelrod DA , Sung RS, Meyer KH, Wolfe RA , Kaufman DB. Systematic evaluation of pancreas allograft quality, outcomes and geographic variation in utilization. Am J Transplant. 2010; 10: 837-845.

records from the time of earliest listing to the time of latest removal. Patients listed, removed (usually due to transplant), and subsequently relisted are counted separately per concatenated listing.

Age Adult patients are defined as those aged 18 years or older for all organs except lung; lung allocation policy treats patients aged 12 years or older as adults. For waitlist figures, age is defined at the time of listing unless otherwise specified.

Race/ethnicity Multi-racial patients are defined as other/unknown. When a given race group is not shown, it is included with other/unknown.

Expanded criteria donor kidneys Data on willingness to accept an expanded criteria donor (ECD) kidney are available from 2003.

Pancreas data Pancreas data encompass the three types of pancreas waiting lists or transplants: simultaneous kidney-pancreas (SPK), pancreas after kidney (PAK), and pancreas transplant alone (PTA). Pancreata used for islet transplant are excluded.

Lung allocation score The lung allocation score (LAS) became available in 2005. Data by LAS are presented using the most recent LAS before December 31 of each year. In the case of transplant recipients, data by LAS are presented using the LAS at the time of transplant.

Data Requests Requests for data can be made to SRTR at http://www. srtr.org or to OPTN at http://optn.transplant. hrsa.gov.

Notes

Websites

Population reported

http://www.srtr.org is a public website containing transplant program-specific reports, organ procurement organization (OPO)-specific reports, summary tables, archives of past reports, timelines for future reports, risk-adjustment models, methods, basic references for researchers who use SRTR data files, links to the current and past Annual Data Reports and their supporting documentation and data tables, answers to frequently asked questions, and other information. http://securesrtr.transplant.hrsa.gov is a secure website that provides access to the prerelease programand OPO-specific reports, survival spreadsheets, and other useful information. All individual authorized users from transplant

Figure titles indicate adult or pediatric populations; if not specified, data include all patients of all ages. For lung data, patients aged 12 years or older are grouped with adults. Unless otherwise specified, data in each organ-specific chapter include both isolated transplants and multi-organ transplants of the given type. For example, patients on the kidney transplant waiting list include those listed for an isolated kidney, kidney-pancreas, or any other organ combination that includes kidney. Waitlist populations are reported at the person level. If a patient is listed at more than one center, we concatenate those

preface programs and OPOs have their own unique logins for the secure site. http://www.unos.org is a public website containing information on donation and transplantation, data collection instruments (http://www.unos.org/donation/index. php?topic=data_collection), data reports, education materials for patients and transplant professionals, policy development, and other information. This website also links to the OPTN website. http://optn.transplant.hrsa.gov is a public website containing news, information, and resources about transplantation and donation, including transplant data reports, policy development, and related boards and committees. It also contains allocation calculators, a calendar of events, answers to frequently asked questions, and other information.

Contact Information Patient Inquiries 888-894-6361 (UNOS, toll free)

Research Inquiries OPTN/UNOS requests: 804-782-4876 (phone); 804-7824994 (fax) SRTR data requests: 877-970-SRTR (toll free); 612-873-1644 (fax)

Media Inquiries 301-443-3376 (HRSA/Office of Communications) 804-782-4730 (OPTN) 877-970-SRTR (SRTR)

Federal Program Inquiries HHS/HRSA/HSB/DoT 5600 Fishers Lane Parklawn Bldg, Rm 12C-06, Eighth Floor West Rockville, MD 20857 301-443-7577

Abbreviations BMI CDC CDRG CMV COPD CPRA DBD DCD DD DM DoT DSA

body mass index Centers for Disease Control and Prevention Chronic Disease Research Group cytomegalovirus chronic obstructive pulmonary disease calculated panel reactive antibody donation after brain death donation after circulatory death deceased donor diabetes mellitus Division of Transplantation donation service area

data behind the figures can be downloaded from our website, at srtr.transplant.hrsa.gov

EBV ECD ECMO ESRD eGFR FSGS GN HBV HCV HHS HIV HLA HMO HRSA HSB HTN ICU KDPI KDRI LAS LD LVAD MELD mTOR OPO OPTN

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Epstein-Barr virus expanded criteria donor extracorporeal membrane oxygenation end-stage renal disease estimated glomerular filtration rate focal segmental glomerulosclerosis glomerulonephritis hepatitis B virus hepatitis C virus Health and Human Services human immunodeficiency virus human leukocyte antigen health maintenance organization Health Resources and Services Administration Healthcare Systems Bureau hypertension intensive care unit kidney donor profile index kidney donor risk index lung allocation score living donor left ventricular assist device model for end-stage liver disease mammalian target of rapamycin organ procurement organization Organ Procurement and Transplantation Network ORPD organs recovered per donor OTPD organs transplanted per donor PAK pancreas after kidney transplant PELD pediatric end-stage liver disease PRA panel-reactive antibody PTA pancreas transplant alone PTLD posttransplant lymphoproliferative disorder RVAD right ventricular assist device SCD standard criteria donor SGS short gut syndrome SPK simultaneous pancreas-kidney transplant SRTR Scientific Registry of Transplant Recipients TAH total artificial heart UNOS United Network for Organ Sharing VAD ventricular assist device

SRTR 2013 Annual Data Report.

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