1 intestine
waiting list ...................... 4 deceased donation ......... 8 transplant ....................... 9 outcomes ........................ 12 transplant center maps.... 14
J. M. Smith1,2 , M. A. Skeans1 , S. P. Horslen3 , E. B. Edwards4,5 , A. M. Harper4,5 , J. J. Snyder1,6 , A. K. Israni1,6,7 , B. L. Kasiske1,7
1
Scientific Registry of Transplant Recipients, Minneapolis Medical Research Foundation, Minneapolis, MN
2
Department of Pediatrics, University of Washington, Seattle, WA
3
Liver and Intestine Transplantation Program, Seattle Children's Hospital, Seattle, WA
4
Organ Procurement and Transplantation Network, Richmond, VA
5
United Network for Organ Sharing, Richmond, VA
6
Department of Epidemiology and Community Health, University of Minnesota, Minneapolis, MN
7
Department of Medicine, Hennepin County Medical Center, University of Minnesota, Minneapolis, MN
OPTN/SRTR 2013 Annual Data Report:
intestine
ABSTRACT Despite improvements in medical and surgical treatment of intestinal failure over the past decade, intestine transplant continues to play an important role. Of 171 new patients added to the intestine transplant waiting list in 2013, 49% were listed for intestine-liver transplant and 51% for intestine transplant alone or with an organ other than liver. The pretransplant mortality rate decreased dramatically over time for all age groups, from 30.3 per 100 waitlist years in 2002-2003 to 6.9 for patients listed in 2012-2013. The number of intestine transplants decreased from 91 in 2009 to 51 in 2013; intestine-liver transplants decreased from 135 in 2007 to a low of 44 in 2012, but increased slightly to 58 in 2013. Ages of intestine and intestineliver transplant recipients have changed substantially; the number of adult recipients was double the number of pediatric recipients in 2013. Graft survival improved over the past decade. Graft failure in the first 90 days posttransplant occurred in 14.1% of intestine recipients and in 11.2% of intestine-liver recipients in 2013. The number of recipients alive with a functioning intestine graft has steadily increased since 2002, to 1012 in 2013; almost half were pediatric intestine-liver transplant recipients.
KEY WORDS Intestinal failure, intestine transplant, intestine-liver transplant, waiting list.
I hope that my loss has become a great blessing to you and your family. I know that with time my sadness will get better and to know that my beloved Jordan is living on in someone else gives me great comfort. Fara, donor mother
2
OPTN/SRTR 2013 Annual Data Report
Introduction Advances in the medical and surgical treatments of intestinal failure have led to a decrease in the number of transplants over the past decade. Patient survival has improved, and morbidity associated with parenteral nutrition, including liver failure, has declined. Nevertheless, intestine transplant still plays an important role in the treatment of intestinal failure. Intestine transplants may be performed in isolation, with a liver transplant, or as part of a multi-visceral transplant including any combination of liver, stomach, pancreas, colon, spleen, and kidney. Organ allocation, patient outcomes, and transplant outcomes differ notably for intestine transplant alone and intestine-liver transplant. This year’s annual data report separately presents waitlist, transplant, and outcomes information for intestine transplants performed alone or with an organ other than liver and for composite intestine-liver transplants.
Waiting List In 2013, 171 new patients were added to the intestine transplant waiting list, a slight increase from 152 in 2012. Of 2013 candidates, 83 (49%) were listed for intestine-liver transplant and 88 (51%) for intestine transplant alone or with an organ other than liver (Figure IN 1.1). Since 2008, prevalent candidates listed for intestine transplant outnumber those listed for intestine-liver transplant. Over the past decade, the age distribution of waitlisted candidates shifted from primarily pediatric to increasing proportions of adults (Figure IN 1.2). The racial/ethnic distribution of candidates for intestine transplant has not changed, nor has the cause-of-disease distribution. The most common etiology of intestinal failure remains short-gut syndrome (52.8%), which encompasses a
large group of diagnoses. In 2013, 48.1% of candidates were on the waiting list for less than 1 year, 12.3% for 1 to less than 2 years, and 39.6% for 2 or more years. About one-fourth of candidates listed for intestine and for intestine-liver transplant were adults (Figure IN 1.3). The causes of intestinal failure were also similar, though candidates listed for intestine transplant were more likely to have necrotizing enterocolitis or pseudo-obstruction (Figure IN 1.3). Transplant rates and trends varied by candidate age and transplant type (intestine, intestine-liver) (Figure IN 1.4). Among adults actively listed for intestine-liver transplant, rates peaked in 2007 at 193.7 transplants per 100 waitlist years; the rate was 86.8 per 100 waitlist years in 2013. Rates for adult intestine transplant candidates peaked in 2008 at 401.6 transplants per 100 waitlist years and fell to 163.2 in 2013. Rates of pediatric intestineliver transplant declined to a 10-year low of 66.8 per 100 waitlist years in 2013. Transplant rates were lowest for pediatric intestine transplant candidates, at 11.6 transplants per 100 waitlist years (Figure IN 1.4). Regarding 3-year outcomes, 68.7% of intestine transplant candidates listed in 2010 underwent deceased donor transplant, 5.2% died, 7.5% were removed from the list, and 18.7% were still waiting in 2013. Of intestine-liver candidates listed in 2010, 65.7% underwent deceased donor transplant, 10.5% died, 11.4% were removed from the list, and 12.4% were still waiting in 2013 (Figure IN 1.6). Among candidates listed in 2012-2013, median time to transplant was 11.3 months for adult and 7.3 months for pediatric intestine-liver transplant candidates, and 3.6 months for adult intestine transplant candidates. The median was not observed for pediatric intestine transplant candidates; the median for pediatric intestine transplant candidates listed in 2008-2009 was 19.7 months (Figure IN 1.7).
3 intestine
The pretransplant mortality rate decreased dramatically over time for all age groups, from 30.3 per 100 waitlist years in 2002-2003 to 6.9 for patients listed in 2012-2013 (Figure IN 1.8). Pretransplant mortality was highest for adult candidates, 16.1 per 100 waitlist years compared with less than 3 for pediatric candidates. Pretransplant mortality was notably higher for intestine-liver than for intestine transplant candidates (respectively, 14.0 vs. 2.0 deaths per 100 waitlist years in 2012-2013). Pretransplant mortality rates fell similarly for all races and all primary diagnosis groups.
Donation Donation rates are highest among donors aged 5 to 14 years (Figure IN 2.1). The overall rate of intestines recovered for transplant and not transplanted was 9.9% in 2013, the highest since 2004 (Figure IN 2.2). The most common cause of death among deceased intestine donors has been head trauma, 51.4% in 2013 (Figure IN 2.3).
Transplant The number of intestine transplants decreased from 91 in 2009 to 51 in 2013. Numbers of intestine-liver transplants steadily decreased from a peak of 135 in 2007 to a low of 44 in 2012, but increased slightly to 58 in 2013 (Figure IN 3.1). Ages of intestine and intestine-liver transplant recipients have changed substantially; the number of adult recipients was double the number of pediatric recipients in 2013 (Figure IN 3.2). Proportions of male and female recipients were equal in 2013, and 72.5% of recipients were white. In 2013, 52.1% of deceased donor intestines were transplanted with another organ (Figure IN 3.3). Intestine-liver transplants declined substantially from a peak of 52.9% in 2007 to a low of 24.7% in 2011, but increased to 43.8% in 2013. Regarding recipient characteristics in 2013, intestine-liver recipients were younger than intestine recipients (44.8% pediatric versus 19.6%), more likely to have a primary diagnosis of necrotizing enterocolitis or congenital short-gut syndrome, and more likely to be hospitalized at the time of transplant (Figure IN 3.4). In 2013, 19.0% of intestine-liver transplant recipients had undergone a previous intestine transplant, compared with only 2.0% of intestine transplant recipients. For induction therapy in 2013, 54.0% of intestine transplant recipients received T-cell depleting agents, 11.0% received interleukin-2 receptor antagonists, and 38.0% reported no induction (Figure IN 3.5). The initial immunosuppression agents used most commonly in 2013 were tacrolimus (95.0%), steroids (73.0%), mycophenolate (35.0%),
and mammalian target of rapamycin inhibitors (15.0%). Steroids were used in 70.0% of recipients at 1 year posttransplant. Medications most commonly prescribed to adult intestine transplant recipients included immunosuppression, infection prevention, pain, and anti-hypertensive medications (Figure IN 3.6).
Outcomes Graft survival improved over the past decade. Graft failure in the first 90 days posttransplant occurred in 14.1% of intestine recipients and in 11.2% of intestine-liver recipients in 2013 (Figure IN 4.1). The graft failure rate was 4.2% at 1 month for transplants in 2013, 24.5% at 1 year for transplants in 20112012, 43.6% at 3 years for transplants in 2009-2010, 48.5% at 5 years for transplants in 2007-2008, and 68.4% at 10 years for transplants in 2001-2002 (Figure IN 4.2). These numbers should be interpreted with caution, as they represent graft survival for two separate populations: recipients of intestineliver transplants and recipients of intestine transplants. Figure IN 4.3 shows graft survival by recipient age and organ transplanted. For intestine transplants in 2008, 1- and 5-year graft survival was 73.1% and 62.3%, respectively, for recipients aged less than 18 years, and 76.1% and 37.5%, respectively, for recipients aged 18 years or older. One- and 5-year graft survival was 78.6% and 48.0%, respectively, for intestine transplant recipients, and 70.6% and 48.9%, respectively, for intestine-liver recipients. The number of recipients alive with a functioning intestine graft has steadily increased since 2002, to 1012 in 2013; almost half were pediatric intestineliver transplant recipients (Figure IN 4.4). The incidence of first acute rejection increased over time posttransplant. The highest incidence of acute rejection occurred in adult intestine transplant recipients: 44.8% at 1 year and 53.1% at 2 years (Figure IN 4.5). For patients who underwent transplant between 2001 and 2011, 9.9% of intestine recipients and 6.8% of intestine-liver recipients developed posttransplant lymphoproliferative disorder within 5 years posttransplant. The incidence was highest among recipients who were negative for Epstein-Barr virus (EBV): 12.5% of EBV-negative intestine recipients and 8.2 of EBV-negative intestine-liver recipients (Figure IN 4.6). Patient survival was superior for intestine recipients compared with intestine-liver recipients, regardless of age. Patient survival was lowest in adult intestineliver recipients (1- and 5-year survival 69.1% and 46.1%, respectively) and highest in pediatric intestine recipients (1and 5-year survival 89.2% and 81.4%, respectively) (Figure IN 4.7).
data behind the figures can be downloaded from our website, at srtr.transplant.hrsa.gov
4
OPTN/SRTR 2013 Annual Data Report
waiting list 350
New patients
350
Intestine Intestine-liver All
300
Intestine Intestine-liver All
300 250 Patients
250 Patients
Patients on list on Dec 31 each year
200
200
150
150
100
100
50
50 03
05
07 Year
09
11
13
03
05
07 Year
09
11
13
IN 1.1 Candidates waiting for intestine transplant A new patient is one who first joined the list during the given year, without having been listed in a previous year. Previously listed candidates who underwent transplant and subsequently relisted are considered new. Candidates concurrently listed at multiple centers are counted once. Concurrently listed candidates who are active at any program are considered active; those who are inactive at all programs are considered inactive.
IN 1.2 Distribution of candidtes waiting for intestine transplant Candidates waiting for transplant any time in the given year. Candidates listed concurrently at multiple centers are counted once. Age is determined at the later of listing date or January 1 of the given year. Time on the waiting list is determined at the earlier of December 31 or removal from the waiting list. Medical urgency status is the most severe during the year. Active and inactive patients are included. SGS, short-gut syndrome.
5 intestine
waiting list Age
Sex Race
Citizenship
Primary diagnosis
Intestine tx history Blood type
Waiting time
Medical urgency
Multi-organ
All candidates
waiting list ...................... 4 deceased donation ......... 8 transplant ....................... 9 outcomes ........................ 12 transplant center maps.... 14
J. M. Smith1,2 , M. A. Skeans1 , S. P. Horslen3 , E. B. Edwards4,5 , A. M. Harper4,5 , J. J. Snyder1,6 , A. K. Israni1,6,7 , B. L. Kasiske1,7
1
Scientific Registry of Transplant Recipients, Minneapolis Medical Research Foundation, Minneapolis, MN
2
Department of Pediatrics, University of Washington, Seattle, WA
3
Liver and Intestine Transplantation Program, Seattle Children's Hospital, Seattle, WA
4
Organ Procurement and Transplantation Network, Richmond, VA
5
United Network for Organ Sharing, Richmond, VA
6
Department of Epidemiology and Community Health, University of Minnesota, Minneapolis, MN
7
Department of Medicine, Hennepin County Medical Center, University of Minnesota, Minneapolis, MN
OPTN/SRTR 2013 Annual Data Report:
intestine
ABSTRACT Despite improvements in medical and surgical treatment of intestinal failure over the past decade, intestine transplant continues to play an important role. Of 171 new patients added to the intestine transplant waiting list in 2013, 49% were listed for intestine-liver transplant and 51% for intestine transplant alone or with an organ other than liver. The pretransplant mortality rate decreased dramatically over time for all age groups, from 30.3 per 100 waitlist years in 2002-2003 to 6.9 for patients listed in 2012-2013. The number of intestine transplants decreased from 91 in 2009 to 51 in 2013; intestine-liver transplants decreased from 135 in 2007 to a low of 44 in 2012, but increased slightly to 58 in 2013. Ages of intestine and intestineliver transplant recipients have changed substantially; the number of adult recipients was double the number of pediatric recipients in 2013. Graft survival improved over the past decade. Graft failure in the first 90 days posttransplant occurred in 14.1% of intestine recipients and in 11.2% of intestine-liver recipients in 2013. The number of recipients alive with a functioning intestine graft has steadily increased since 2002, to 1012 in 2013; almost half were pediatric intestine-liver transplant recipients.
KEY WORDS Intestinal failure, intestine transplant, intestine-liver transplant, waiting list.
I hope that my loss has become a great blessing to you and your family. I know that with time my sadness will get better and to know that my beloved Jordan is living on in someone else gives me great comfort. Fara, donor mother
2
OPTN/SRTR 2013 Annual Data Report
Introduction Advances in the medical and surgical treatments of intestinal failure have led to a decrease in the number of transplants over the past decade. Patient survival has improved, and morbidity associated with parenteral nutrition, including liver failure, has declined. Nevertheless, intestine transplant still plays an important role in the treatment of intestinal failure. Intestine transplants may be performed in isolation, with a liver transplant, or as part of a multi-visceral transplant including any combination of liver, stomach, pancreas, colon, spleen, and kidney. Organ allocation, patient outcomes, and transplant outcomes differ notably for intestine transplant alone and intestine-liver transplant. This year’s annual data report separately presents waitlist, transplant, and outcomes information for intestine transplants performed alone or with an organ other than liver and for composite intestine-liver transplants.
Waiting List In 2013, 171 new patients were added to the intestine transplant waiting list, a slight increase from 152 in 2012. Of 2013 candidates, 83 (49%) were listed for intestine-liver transplant and 88 (51%) for intestine transplant alone or with an organ other than liver (Figure IN 1.1). Since 2008, prevalent candidates listed for intestine transplant outnumber those listed for intestine-liver transplant. Over the past decade, the age distribution of waitlisted candidates shifted from primarily pediatric to increasing proportions of adults (Figure IN 1.2). The racial/ethnic distribution of candidates for intestine transplant has not changed, nor has the cause-of-disease distribution. The most common etiology of intestinal failure remains short-gut syndrome (52.8%), which encompasses a
large group of diagnoses. In 2013, 48.1% of candidates were on the waiting list for less than 1 year, 12.3% for 1 to less than 2 years, and 39.6% for 2 or more years. About one-fourth of candidates listed for intestine and for intestine-liver transplant were adults (Figure IN 1.3). The causes of intestinal failure were also similar, though candidates listed for intestine transplant were more likely to have necrotizing enterocolitis or pseudo-obstruction (Figure IN 1.3). Transplant rates and trends varied by candidate age and transplant type (intestine, intestine-liver) (Figure IN 1.4). Among adults actively listed for intestine-liver transplant, rates peaked in 2007 at 193.7 transplants per 100 waitlist years; the rate was 86.8 per 100 waitlist years in 2013. Rates for adult intestine transplant candidates peaked in 2008 at 401.6 transplants per 100 waitlist years and fell to 163.2 in 2013. Rates of pediatric intestineliver transplant declined to a 10-year low of 66.8 per 100 waitlist years in 2013. Transplant rates were lowest for pediatric intestine transplant candidates, at 11.6 transplants per 100 waitlist years (Figure IN 1.4). Regarding 3-year outcomes, 68.7% of intestine transplant candidates listed in 2010 underwent deceased donor transplant, 5.2% died, 7.5% were removed from the list, and 18.7% were still waiting in 2013. Of intestine-liver candidates listed in 2010, 65.7% underwent deceased donor transplant, 10.5% died, 11.4% were removed from the list, and 12.4% were still waiting in 2013 (Figure IN 1.6). Among candidates listed in 2012-2013, median time to transplant was 11.3 months for adult and 7.3 months for pediatric intestine-liver transplant candidates, and 3.6 months for adult intestine transplant candidates. The median was not observed for pediatric intestine transplant candidates; the median for pediatric intestine transplant candidates listed in 2008-2009 was 19.7 months (Figure IN 1.7).
3 intestine
The pretransplant mortality rate decreased dramatically over time for all age groups, from 30.3 per 100 waitlist years in 2002-2003 to 6.9 for patients listed in 2012-2013 (Figure IN 1.8). Pretransplant mortality was highest for adult candidates, 16.1 per 100 waitlist years compared with less than 3 for pediatric candidates. Pretransplant mortality was notably higher for intestine-liver than for intestine transplant candidates (respectively, 14.0 vs. 2.0 deaths per 100 waitlist years in 2012-2013). Pretransplant mortality rates fell similarly for all races and all primary diagnosis groups.
Donation Donation rates are highest among donors aged 5 to 14 years (Figure IN 2.1). The overall rate of intestines recovered for transplant and not transplanted was 9.9% in 2013, the highest since 2004 (Figure IN 2.2). The most common cause of death among deceased intestine donors has been head trauma, 51.4% in 2013 (Figure IN 2.3).
Transplant The number of intestine transplants decreased from 91 in 2009 to 51 in 2013. Numbers of intestine-liver transplants steadily decreased from a peak of 135 in 2007 to a low of 44 in 2012, but increased slightly to 58 in 2013 (Figure IN 3.1). Ages of intestine and intestine-liver transplant recipients have changed substantially; the number of adult recipients was double the number of pediatric recipients in 2013 (Figure IN 3.2). Proportions of male and female recipients were equal in 2013, and 72.5% of recipients were white. In 2013, 52.1% of deceased donor intestines were transplanted with another organ (Figure IN 3.3). Intestine-liver transplants declined substantially from a peak of 52.9% in 2007 to a low of 24.7% in 2011, but increased to 43.8% in 2013. Regarding recipient characteristics in 2013, intestine-liver recipients were younger than intestine recipients (44.8% pediatric versus 19.6%), more likely to have a primary diagnosis of necrotizing enterocolitis or congenital short-gut syndrome, and more likely to be hospitalized at the time of transplant (Figure IN 3.4). In 2013, 19.0% of intestine-liver transplant recipients had undergone a previous intestine transplant, compared with only 2.0% of intestine transplant recipients. For induction therapy in 2013, 54.0% of intestine transplant recipients received T-cell depleting agents, 11.0% received interleukin-2 receptor antagonists, and 38.0% reported no induction (Figure IN 3.5). The initial immunosuppression agents used most commonly in 2013 were tacrolimus (95.0%), steroids (73.0%), mycophenolate (35.0%),
and mammalian target of rapamycin inhibitors (15.0%). Steroids were used in 70.0% of recipients at 1 year posttransplant. Medications most commonly prescribed to adult intestine transplant recipients included immunosuppression, infection prevention, pain, and anti-hypertensive medications (Figure IN 3.6).
Outcomes Graft survival improved over the past decade. Graft failure in the first 90 days posttransplant occurred in 14.1% of intestine recipients and in 11.2% of intestine-liver recipients in 2013 (Figure IN 4.1). The graft failure rate was 4.2% at 1 month for transplants in 2013, 24.5% at 1 year for transplants in 20112012, 43.6% at 3 years for transplants in 2009-2010, 48.5% at 5 years for transplants in 2007-2008, and 68.4% at 10 years for transplants in 2001-2002 (Figure IN 4.2). These numbers should be interpreted with caution, as they represent graft survival for two separate populations: recipients of intestineliver transplants and recipients of intestine transplants. Figure IN 4.3 shows graft survival by recipient age and organ transplanted. For intestine transplants in 2008, 1- and 5-year graft survival was 73.1% and 62.3%, respectively, for recipients aged less than 18 years, and 76.1% and 37.5%, respectively, for recipients aged 18 years or older. One- and 5-year graft survival was 78.6% and 48.0%, respectively, for intestine transplant recipients, and 70.6% and 48.9%, respectively, for intestine-liver recipients. The number of recipients alive with a functioning intestine graft has steadily increased since 2002, to 1012 in 2013; almost half were pediatric intestineliver transplant recipients (Figure IN 4.4). The incidence of first acute rejection increased over time posttransplant. The highest incidence of acute rejection occurred in adult intestine transplant recipients: 44.8% at 1 year and 53.1% at 2 years (Figure IN 4.5). For patients who underwent transplant between 2001 and 2011, 9.9% of intestine recipients and 6.8% of intestine-liver recipients developed posttransplant lymphoproliferative disorder within 5 years posttransplant. The incidence was highest among recipients who were negative for Epstein-Barr virus (EBV): 12.5% of EBV-negative intestine recipients and 8.2 of EBV-negative intestine-liver recipients (Figure IN 4.6). Patient survival was superior for intestine recipients compared with intestine-liver recipients, regardless of age. Patient survival was lowest in adult intestineliver recipients (1- and 5-year survival 69.1% and 46.1%, respectively) and highest in pediatric intestine recipients (1and 5-year survival 89.2% and 81.4%, respectively) (Figure IN 4.7).
data behind the figures can be downloaded from our website, at srtr.transplant.hrsa.gov
4
OPTN/SRTR 2013 Annual Data Report
waiting list 350
New patients
350
Intestine Intestine-liver All
300
Intestine Intestine-liver All
300 250 Patients
250 Patients
Patients on list on Dec 31 each year
200
200
150
150
100
100
50
50 03
05
07 Year
09
11
13
03
05
07 Year
09
11
13
IN 1.1 Candidates waiting for intestine transplant A new patient is one who first joined the list during the given year, without having been listed in a previous year. Previously listed candidates who underwent transplant and subsequently relisted are considered new. Candidates concurrently listed at multiple centers are counted once. Concurrently listed candidates who are active at any program are considered active; those who are inactive at all programs are considered inactive.
IN 1.2 Distribution of candidtes waiting for intestine transplant Candidates waiting for transplant any time in the given year. Candidates listed concurrently at multiple centers are counted once. Age is determined at the later of listing date or January 1 of the given year. Time on the waiting list is determined at the earlier of December 31 or removal from the waiting list. Medical urgency status is the most severe during the year. Active and inactive patients are included. SGS, short-gut syndrome.
5 intestine
waiting list Age
Sex Race
Citizenship
Primary diagnosis
Intestine tx history Blood type
Waiting time
Medical urgency
Multi-organ
All candidates
