Intestine

OPTN/SRTR 2019 Annual Data Report: Intestine

Abstract

Intestine transplant can be life-saving and can improve quality of life for patients with intestinal failure. Medical and surgical advances in treatment of intestinal failure over the past 10 to 15 years have resulted in fewer patients being added to the waiting list for intestine transplant alone or for intestine transplant in combination with liver transplant (and sometimes other organs). Consequently, fewer transplants are being performed. The numbers of listings and transplants fell to new lows in 2019. The number of programs performing transplants in at least one patient in 2019 was the lowest in the last decade, equal to 2014, at 15. Graft failure plateaued over the past decade, but early graft loss has increased in the past 2 years, notably in recipients of a combined liver and intestine allograft. Five-year patient survival for transplants in 2012-2014 varied little by graft type.

Introduction

Medical and surgical advances in treatment of intestinal failure has resulted in fewer patients seeking intestine transplant, as witnessed by fewer additions to the waiting list and a concomitant decrease in the number of transplant procedures over the past 10 years. Patient survival in the absence of intestine transplant has improved, and morbidity associated with parenteral nutrition, particularly liver failure, has declined. Nevertheless, intestine transplant continues to offer a life-saving option for patients with severe complications associated with long-term dependence on parenteral nutrition, and substantial quality-of-life improvement for some. 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. Patient and allograft outcomes differ notably for intestine transplants with and without liver, and for pediatric and adult recipients. Information on the waiting list, transplants, and outcomes is presented for both types of transplants, referred to as intestine-liver and intestine transplants, respectively. Both types include multi-visceral transplants, distinguished by inclusion or exclusion of liver.

Waiting List

The number of new patients added to the intestine transplant waiting list decreased over the past decade, reaching a low of 103 in 2019, compared with 267 in 2008; 47 new patients were added for intestine and 56 for intestine-liver transplant (Figure IN 1). Among the 349 prevalent patients on the waiting list at the end of 2019, 188 (53.9%) were waiting for intestine and 161 (46.1%) for intestine-liver transplant (Figure IN 2). Over the past decade, the age distribution of candidates waitlisted for intestine and intestine-liver transplant shifted to an increasing proportion of adults (Figure IN 3). In 2019, 59% of candidates on the intestine waiting list were aged younger than 18 years, and adults accounted for 41% (Figure IN 3). The racial/ethnic distribution remained relatively consistent over time; white patients represented 60% of those waiting for an intestine transplant in 2019 (Figure IN 5). The most common etiology of intestinal failure remained short-gut syndrome (SGS; 47%), which encompasses a large group of diagnoses (Figure IN 6).

Characteristics of intestine and intestine-liver candidates on the waiting list at the end of 2019 were similar with respect to age and race; most were aged younger than18 years and white (Table IN 1). Intestine candidates were 52.9% female and intestine-liver candidates 37.8%. Considering disease etiology, congenital and non-congenital SGS were the leading causes of disease among intestine and intestine-liver transplant candidates (Table IN 2). Intestine-liver candidates were more often listed as status 1 than intestine candidates (52.2% vs. 30.9%; Table IN 2), and they were more often listed for re-transplant (Table IN 3). The overall intestine transplant rate continued to decrease from a peak of 80.9 transplants per 100 waitlist year in 2008 to a new low of 34.8 transplants per 100 waitlist years in 2019 (Figure IN 9). Rates varied by candidate age, and were lowest for candidates aged younger than 18 years (20.8 per 100 waitlist years) (Figure IN 10). Transplant rates varied by transplant type (intestine, intestine-liver) (Figure IN 12). In 2019, transplant rates were slightly higher for intestine-liver candidates (41.3 per 100 waitlist years) than for intestine candidates (30.2 per 100 waitlist years).

Of the 60 candidates removed from the intestine waiting list in 2019, 41 (68.3%) underwent deceased donor transplant, 4 (6.7%) died, 7 (11.7%) were removed from the list because their condition improved, and 1 (1.7%) was considered too sick to undergo transplant (Table IN 4, Table IN 5). Of the 65 candidates removed from the intestine-liver waiting list, 40 (61.5%) underwent deceased donor transplant, 11 (16.9%) died, 6 (9.2%) were removed from the list because their condition improved, and 4 (6.2%) were considered too sick to undergo transplant (Table IN 4, Table IN 5). Among candidates listed for intestine transplant without liver in 2016, 69.2% underwent deceased donor transplant within 3 years, 4.1% died, 10.9% were removed from the list, and 15.8% were still waiting in 2019 (Figure IN 13). Of intestine-liver candidates listed in 2016, 62.9% underwent deceased donor transplant, 17.4% were removed from the list, 10.3% died, and 9.3% were still waiting in 2019 (Figure IN 14). Among candidates listed in 2018-2019, median time to transplant was 6.2 months for intestine-liver candidates, and 9.7 months for intestine candidates (Figure IN 15).

The overall pretransplant mortality for intestinal transplant candidates was 7.1 deaths per 100 waitlist years (Figure IN 16), and rates varied by age. Among candidates on the waiting list in 2019, by age, pretransplant mortality was higher for adults candidates (15.5 deaths per 100 waitlist-years) than for pediatric candidates (3.1 deaths per 100 waitlist-years) (Figure IN 17). Regarding type of transplant, pretransplant mortality was higher for intestine-liver (13.0 deaths per 100 waitlist years) than for intestine transplant candidates (2.9 death per 100 waitlist years) (Figure IN 20).

Donation

The number of donors whose intestines were recovered for transplant continued to decrease, reaching a low of 86 in 2019 (Figure IN 22). The highest proportion of intestine donors in 2019 were aged younger than 18 years (58%) (Figure IN 24). Most intestine donors were white (62.8%) (Figure IN 26). The overall rate of intestines recovered for transplant and not transplanted was 5.8% in 2019 (Figure IN 27). The most common cause of death among deceased intestine donors has been head trauma, 58% in 2019 (Figure IN 29).

Transplant

In 2019, the number of intestine transplants performed declined to its lowest level, 81, with almost equal numbers of intestine and intestine-liver transplants (Figure IN 30, Figure IN 31). Over the past decade, the number of active programs has fluctuated between 15 and 20. New program requirements introduced in 2018 may have an effect on the number of programs, but it remains early to assess their impact. In 2019, only 15 programs performed intestine transplants, four only in pediatrics, four only in adults, and seven in both adults and pediatrics (Figure IN 39). The median annual program volume was only three intestine transplants in 2019; the 95th percentile of program volume was 17 transplants (Figure IN 40). In 2019, 63.0% of intestine transplants were performed at programs performing ten or more transplants per year, 22.2% at programs performing three to nine transplants per year, and only 14.8% at programs performing one to two transplant per year (Figure IN 41).

While the number of intestine and intestine-liver transplant recipients has declined over the past decade, the distribution by age remained stable, with slightly more adult than pediatric recipients. Pediatric recipient counts declined from 62 in 2010 to 32 in 2019, and adult recipient counts declined from 89 to 49 (Figure IN 32). In 2019, just over half of intestine-liver recipients were aged younger than 18 years, 52.5% vs. 26.8% of intestine recipients (Table IN 6). SGS (congenital and non-congenital) was the main cause of disease leading to both intestine and intestine-liver transplant (Table IN 7). Among those who underwent transplant in 2019, 65.9% of intestine recipients and 87.5% of intestine-liver recipients had waited less than a year (Table IN 8).

Immunosuppression

Over the past decade, use of induction immunosuppression in intestine transplant has increased; 74.1% of patients reported some induction in 2019 (Figure IN 36). The most common initial immunosuppression agent regimen in 2019 was tacrolimus and steroids (44.4%) (Figure IN 37).

Outcomes

Graft failure plateaued over the past decade. The graft failure rate among intestine transplant recipients was 18.4% at 6 months and 23.7% at 1 year for transplants in 2018, 43.1% at 3 years for transplants in 2016, 56.3% at 5 years for transplants in 2014, and 61.9% at 10 years for transplants in 2009 (Figure IN 42). Among intestine-liver transplant recipients, the graft failure rate was 41.4% at 6 months and 48.3% at 1 year for transplants in 2018, 46.9% at 3 years for transplants in 2016, 60.0% at 5 years for transplants in 2014, and 72.7% at 10 years for transplants in 2009 (Figure IN 43). For intestine transplants with or without a liver in 2012-2014, 1- and 5-year graft survival was 68.9% and 44.7%, respectively, for recipients aged 18 years or older, and 81.1% and 60.8% for recipients aged younger than 18 years (Figure IN 44). One- and 5-year graft survival was 75.6% and 45.6%, respectively, for intestine recipients, and 72.4% and 57.5%, respectively, for intestine-liver recipients (Figure IN 45). The number of recipients alive with a functioning intestine graft continued to increase, to 1207, on June 30, 2019; pediatric intestine-liver transplant recipients were the predominant group, at 43.6% (Figure IN 47). The incidence of first acute rejection in the first year posttransplant varied by age group and transplant type. Among recipients in 2017-2018, incidence of acute rejection was highest in pediatric intestine recipients (62.5%) and lowest in adult intestine-liver recipients (25.9%) (Figure IN 48). For recipients in 2007-2017, 9.1% of intestine recipients (Figure IN 50) and 7.7% of intestine-liver recipients (Figure IN 51) developed posttransplant lymphoproliferative disorder within 5 years posttransplant, and rates varied by recipient Epstein-Barre virus serostatus. Patient survival for transplants in 2012-2014 was similar by transplant type: 1- and 5-year survival 82.0% and 57.3% for intestine recipients and 77.6% and 63.2% for intestine-liver recipients (Figure IN 52).

Figure List

Waiting list

Figure IN 1. New candidates added to the intestine transplant waiting list by liver co-listing
Figure IN 2. All candidates on the intestine transplant waiting list by liver co-listing
Figure IN 3. Distribution of candidates waiting for intestine transplant by age
Figure IN 4. Distribution of candidates waiting for intestine transplant by sex
Figure IN 5. Distribution of candidates waiting for intestine transplant by race
Figure IN 6. Distribution of candidates waiting for intestine transplant by diagnosis
Figure IN 7. Distribution of candidates waiting for intestine transplant by waiting time
Figure IN 8. Distribution of candidates waiting for intestine transplant by liver co-listing
Figure IN 9. Overall donor intestine transplant rates among waitlist candidates
Figure IN 10. Deceased donor intestine transplant rates among waitlist candidates by age
Figure IN 11. Deceased donor intestine transplant rates among waitlist candidates by race
Figure IN 12. Deceased donor intestine transplant rates among waitlisted adult candidates by liver co-listing
Figure IN 13. Three-year outcomes for candidates waiting for intestine transplant without liver, new listings in 2016
Figure IN 14. Three-year outcomes for candidates waiting for intestine transplant with liver, new listings in 2016
Figure IN 15. Median months to intestine transplant for waitlist candidates by liver co-listing
Figure IN 16. Overall pretransplant mortality rates among candidates waitlisted for intestine transplant
Figure IN 17. Pretransplant mortality rates among candidates waitlisted for intestine transplant by age
Figure IN 18. Pretransplant mortality rates among candidates waitlisted for intestine transplant by race
Figure IN 19. Pretransplant mortality rates among candidates waitlisted for intestine transplant by sex
Figure IN 20. Pretransplant mortality rates among candidates waitlisted for intestine transplant by liver co-listing
Figure IN 21. Overall deaths within six months after removal among intestine waitlist candidates

Deceased donation

Figure IN 22. Overall deceased intestine donor count
Figure IN 23. Deceased intestine donor count by age
Figure IN 24. Distribution of deceased intestine donors by age
Figure IN 25. Distribution of deceased intestine donors by sex
Figure IN 26. Distribution of deceased intestine donors by race
Figure IN 27. Overall rates of intestines recovered for transplant and not transplanted
Figure IN 28. Rates of intestines recovered for transplant and not transplanted by donor sex
Figure IN 29. Cause of death among deceased intestine donors

Transplant

Figure IN 30. Overall intestine transplants
Figure IN 31. Total intestine transplants by transplant type
Figure IN 32. Total intestine transplants by age
Figure IN 33. Total intestine transplants by sex
Figure IN 34. Total intestine transplants by race
Figure IN 35. Total intestine transplants by diagnosis
Figure IN 36. Induction agent use in intestine transplant recipients
Figure IN 37. Distribution of immunosuppression regimen use in intestine transplant recipients
Figure IN 38. Total HLA A, B, and DR mismatches among deceased donor intestine transplant recipients, 2015-2019
Figure IN 39. Number of centers performing adult and pediatric intestine transplants by center's age mix
Figure IN 40. Annual intestine transplant center volumes by percentile
Figure IN 41. Distribution of intestine transplants by annual center volume

Outcomes

Figure IN 42. Graft failure among transplant recipients of intestine without liver
Figure IN 43. Graft failure among transplant recipients of intestine with liver
Figure IN 44. Graft survival among deceased donor intestine transplant recipients, 2012-2014, by age
Figure IN 45. Graft survival among deceased donor intestine transplant recipients, 2012-2014, by transplant type
Figure IN 46. Graft survival among deceased donor intestine transplant recipients, 2012-2014, by metropolitan vs. non-metropolitan recipient residence
Figure IN 47. Recipients alive with a functioning intestine graft on June 30 of the year, by age at transplant and procedure
Figure IN 48. Incidence of acute rejection by 1 year posttransplant among intestine transplant recipients by age, 2017-2018
Figure IN 49. Incidence of acute rejection by 1 year posttransplant among intestine transplant recipients by induction agent 2017-2018
Figure IN 50. Incidence of PTLD among recipients of intestine transplant without liver by recipient EBV status at transplant, 2007-2017
Figure IN 51. Incidence of PTLD among recipients of intestine transplant with liver by recipient EBV status at transplant, 2007-2017
Figure IN 52. Patient survival among deceased donor intestine transplant recipients, 2012-2014, by transplant type

Table List

Waiting list

Table IN 1. Demographic characteristics of candidates on the intestine transplant waiting list on December 31, 2019
Table IN 2. Clinical characteristics of candidates on the intestine transplant waiting list on December 31, 2019
Table IN 3. Listing characteristics of candidates on the intestine transplant waiting list on December 31, 2019
Table IN 4. Intestine transplant waitlist activity, 2019
Table IN 5. Removal reason among intestine transplant candidates, 2019

Transplant

Table IN 6. Demographic characteristics of intestine transplant recipients, 2019
Table IN 7. Clinical characteristics of intestine transplant recipients, 2019
Table IN 8. Transplant characteristics of intestine transplant recipients, 2019

A new candidate 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. Active and inactive patients are included. Candidates listed at more than one center are counted once per listing. New intestine-liver candidates are those listed for both organs on the same day.

Figure IN 1. New candidates added to the intestine transplant waiting list by liver co-listing
A new candidate 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. Active and inactive patients are included. Candidates listed at more than one center are counted once per listing. New intestine-liver candidates are those listed for both organs on the same day.


Candidates on the list at any time during the year. Candidates listed at more than one center are counted once per listing.

Figure IN 2. All candidates on the intestine transplant waiting list by liver co-listing
Candidates on the list at any time during the year. Candidates listed at more than one center are counted once per listing.


Candidates waiting for transplant at any time in the given year. Age is determined at the later of listing date or January 1 of the given year. Active and inactive candidates are included. Candidates listed at more than one center are counted once per listing.

Figure IN 3. Distribution of candidates waiting for intestine transplant by age
Candidates waiting for transplant at any time in the given year. Age is determined at the later of listing date or January 1 of the given year. Active and inactive candidates are included. Candidates listed at more than one center are counted once per listing.


Candidates waiting for transplant at any time in the given year. Active and inactive patients are included. Candidates listed at more than one center are counted once per listing.

Figure IN 4. Distribution of candidates waiting for intestine transplant by sex
Candidates waiting for transplant at any time in the given year. Active and inactive patients are included. Candidates listed at more than one center are counted once per listing.


Candidates waiting for transplant at any time in the given year. Active and inactive patients are included. Candidates listed at more than one center are counted once per listing.

Figure IN 5. Distribution of candidates waiting for intestine transplant by race
Candidates waiting for transplant at any time in the given year. Active and inactive patients are included. Candidates listed at more than one center are counted once per listing.


Candidates waiting for transplant at any time in the given year. Active and inactive patients are included. Candidates listed at more than one center are counted once per listing. SGS, short-gut syndrome.

Figure IN 6. Distribution of candidates waiting for intestine transplant by diagnosis
Candidates waiting for transplant at any time in the given year. Active and inactive patients are included. Candidates listed at more than one center are counted once per listing. SGS, short-gut syndrome.


Candidates waiting for transplant at any time in the given year. Time on the waiting list is determined at the later of listing date or January 1 of the given year. Active and inactive candidates are included. Candidates listed at more than one center are counted once per listing.

Figure IN 7. Distribution of candidates waiting for intestine transplant by waiting time
Candidates waiting for transplant at any time in the given year. Time on the waiting list is determined at the later of listing date or January 1 of the given year. Active and inactive candidates are included. Candidates listed at more than one center are counted once per listing.


Candidates waiting for transplant at any time in the given year. Intestine-liver candidates were dually listed on at least one day during the year. Active and inactive patients are included. Candidates listed at more than one center are counted once per listing.

Figure IN 8. Distribution of candidates waiting for intestine transplant by liver co-listing
Candidates waiting for transplant at any time in the given year. Intestine-liver candidates were dually listed on at least one day during the year. Active and inactive patients are included. Candidates listed at more than one center are counted once per listing.


Transplant rates are computed as the number of deceased donor transplants per 100 patient-years of wait time in a given year. Candidates listed at more than one center are counted once per listing.

Figure IN 9. Overall donor intestine transplant rates among waitlist candidates
Transplant rates are computed as the number of deceased donor transplants per 100 patient-years of wait time in a given year. Candidates listed at more than one center are counted once per listing.


Transplant rates are computed as the number of deceased donor transplants per 100 patient-years of wait time in a given year. Candidates listed at more than one center are counted once per listing. Age is determined at the later of listing date or January 1 of the given year.

Figure IN 10. Deceased donor intestine transplant rates among waitlist candidates by age
Transplant rates are computed as the number of deceased donor transplants per 100 patient-years of wait time in a given year. Candidates listed at more than one center are counted once per listing. Age is determined at the later of listing date or January 1 of the given year.


Transplant rates are computed as the number of deceased donor transplants per 100 patient-years of wait time in a given year. Candidates listed at more than one center are counted once per listing.

Figure IN 11. Deceased donor intestine transplant rates among waitlist candidates by race
Transplant rates are computed as the number of deceased donor transplants per 100 patient-years of wait time in a given year. Candidates listed at more than one center are counted once per listing.


Transplant rates are computed as the number of deceased donor transplants per 100 patient-years of waiting in a given year. Candidates listed at more than one center are counted once per listing. Intestine-liver co-listing is determined at the time of listing.

Figure IN 12. Deceased donor intestine transplant rates among waitlisted adult candidates by liver co-listing
Transplant rates are computed as the number of deceased donor transplants per 100 patient-years of waiting in a given year. Candidates listed at more than one center are counted once per listing. Intestine-liver co-listing is determined at the time of listing.


Candidates listed at more than one center are counted once per listing. Removed from list includes all reasons except transplant and death. DD, deceased donor.

Figure IN 13. Three-year outcomes for candidates waiting for intestine transplant without liver, new listings in 2016
Candidates listed at more than one center are counted once per listing. Removed from list includes all reasons except transplant and death. DD, deceased donor.


Candidates listed at more than one center are counted once per listing. Removed from list includes all reasons except transplant and death. DD, deceased donor.

Figure IN 14. Three-year outcomes for candidates waiting for intestine transplant with liver, new listings in 2016
Candidates listed at more than one center are counted once per listing. Removed from list includes all reasons except transplant and death. DD, deceased donor.


Observations censored on December 31, 2019; Kaplan-Meier competing risk methods used to estimate time to transplant. Analysis performed once per listing. If an estimate is not plotted, 50% of the cohort listed in that year had not undergone transplant by the censoring date. Only the first transplant is counted. IN, intestine without liver; IN-LI, intestine-liver.

Figure IN 15. Median months to intestine transplant for waitlist candidates by liver co-listing
Observations censored on December 31, 2019; Kaplan-Meier competing risk methods used to estimate time to transplant. Analysis performed once per listing. If an estimate is not plotted, 50% of the cohort listed in that year had not undergone transplant by the censoring date. Only the first transplant is counted. IN, intestine without liver; IN-LI, intestine-liver.


Mortality rates are computed as the number of deaths per 100 patient-years of waiting in the given year. Waiting time is censored at transplant, death, transfer to another program, removal because of improved condition, or end of cohort. Candidates listed at more than one center are counted once per listing.

Figure IN 16. Overall pretransplant mortality rates among candidates waitlisted for intestine transplant
Mortality rates are computed as the number of deaths per 100 patient-years of waiting in the given year. Waiting time is censored at transplant, death, transfer to another program, removal because of improved condition, or end of cohort. Candidates listed at more than one center are counted once per listing.


Mortality rates are computed as the number of deaths per 100 patient-years of waiting in the given year. Waiting time is censored at transplant, death, transfer to another program, removal because of improved condition, or end of cohort. Candidates listed at more than one center are counted once per listing. Age is determined at the later of listing date or January 1 of the given year.

Figure IN 17. Pretransplant mortality rates among candidates waitlisted for intestine transplant by age
Mortality rates are computed as the number of deaths per 100 patient-years of waiting in the given year. Waiting time is censored at transplant, death, transfer to another program, removal because of improved condition, or end of cohort. Candidates listed at more than one center are counted once per listing. Age is determined at the later of listing date or January 1 of the given year.


Mortality rates are computed as the number of deaths per 100 patient-years of waiting in the given year. Waiting time is censored at transplant, death, transfer to another program, removal because of improved condition, or end of cohort. Candidates listed at more than one center are counted once per listing.

Figure IN 18. Pretransplant mortality rates among candidates waitlisted for intestine transplant by race
Mortality rates are computed as the number of deaths per 100 patient-years of waiting in the given year. Waiting time is censored at transplant, death, transfer to another program, removal because of improved condition, or end of cohort. Candidates listed at more than one center are counted once per listing.


Mortality rates are computed as the number of deaths per 100 patient-years of waiting in the given year. Waiting time is censored at transplant, death, transfer to another program, removal because of improved condition, or end of cohort. Candidates listed at more than one center are counted once per listing.

Figure IN 19. Pretransplant mortality rates among candidates waitlisted for intestine transplant by sex
Mortality rates are computed as the number of deaths per 100 patient-years of waiting in the given year. Waiting time is censored at transplant, death, transfer to another program, removal because of improved condition, or end of cohort. Candidates listed at more than one center are counted once per listing.


Mortality rates are computed as the number of deaths per 100 patient-years of waiting in the given year. Waiting time is censored at transplant, death, transfer to another program, removal because of improved condition, or end of cohort. Candidates listed at more than one center are counted once per listing. Intestine-liver co-listing is determined at the later of listing date and January 1 of the year.

Figure IN 20. Pretransplant mortality rates among candidates waitlisted for intestine transplant by liver co-listing
Mortality rates are computed as the number of deaths per 100 patient-years of waiting in the given year. Waiting time is censored at transplant, death, transfer to another program, removal because of improved condition, or end of cohort. Candidates listed at more than one center are counted once per listing. Intestine-liver co-listing is determined at the later of listing date and January 1 of the year.


Denominator includes only candidates removed from the waiting list for reasons other than transplant or death while on the list.

Figure IN 21. Overall deaths within six months after removal among intestine waitlist candidates
Denominator includes only candidates removed from the waiting list for reasons other than transplant or death while on the list.


Count of deceased donors whose intestines were recovered for transplant.

Figure IN 22. Overall deceased intestine donor count
Count of deceased donors whose intestines were recovered for transplant.


Count of deceased donors whose intestines were recovered for transplant.

Figure IN 23. Deceased intestine donor count by age
Count of deceased donors whose intestines were recovered for transplant.


Deceased donors whose intestines were recovered for transplant.

Figure IN 24. Distribution of deceased intestine donors by age
Deceased donors whose intestines were recovered for transplant.


Deceased donors whose intestines were recovered for transplant.

Figure IN 25. Distribution of deceased intestine donors by sex
Deceased donors whose intestines were recovered for transplant.


Deceased donors whose intestines were recovered for transplant.

Figure IN 26. Distribution of deceased intestine donors by race
Deceased donors whose intestines were recovered for transplant.


Percentages of intestines not transplanted out of all intestines recovered for transplant.

Figure IN 27. Overall rates of intestines recovered for transplant and not transplanted
Percentages of intestines not transplanted out of all intestines recovered for transplant.


Percentages of intestines not transplanted out of all intestines recovered for transplant.

Figure IN 28. Rates of intestines recovered for transplant and not transplanted by donor sex
Percentages of intestines not transplanted out of all intestines recovered for transplant.


Deceased donors whose intestines were transplanted. CVA, cerebrovascular accident.

Figure IN 29. Cause of death among deceased intestine donors
Deceased donors whose intestines were transplanted. CVA, cerebrovascular accident.


All intestine transplant recipients, including adult and pediatric, retransplant, and multi-organ recipients.

Figure IN 30. Overall intestine transplants
All intestine transplant recipients, including adult and pediatric, retransplant, and multi-organ recipients.


All intestine transplant recipients, including adult and pediatric, retransplant, and multi-organ recipients.

Figure IN 31. Total intestine transplants by transplant type
All intestine transplant recipients, including adult and pediatric, retransplant, and multi-organ recipients.


All intestine transplant recipients, including adult and pediatric, retransplant, and multi-organ recipients.

Figure IN 32. Total intestine transplants by age
All intestine transplant recipients, including adult and pediatric, retransplant, and multi-organ recipients.


All intestine transplant recipients, including adult and pediatric, retransplant, and multi-organ recipients.

Figure IN 33. Total intestine transplants by sex
All intestine transplant recipients, including adult and pediatric, retransplant, and multi-organ recipients.


All intestine transplant recipients, including adult and pediatric, retransplant, and multi-organ recipients.

Figure IN 34. Total intestine transplants by race
All intestine transplant recipients, including adult and pediatric, retransplant, and multi-organ recipients.


All intestine transplant recipients, including adult and pediatric, retransplant, and multi-organ recipients. SGS, short-gut syndrome.

Figure IN 35. Total intestine transplants by diagnosis
All intestine transplant recipients, including adult and pediatric, retransplant, and multi-organ recipients. SGS, short-gut syndrome.


Immunosuppression at transplant reported to the OPTN.

Figure IN 36. Induction agent use in intestine transplant recipients
Immunosuppression at transplant reported to the OPTN.


Immunosuppression regimen at transplant reported to the OPTN. Tac, tacrolimus. MMF, all mycophenolate agents.

Figure IN 37. Distribution of immunosuppression regimen use in intestine transplant recipients
Immunosuppression regimen at transplant reported to the OPTN. Tac, tacrolimus. MMF, all mycophenolate agents.


Donor and recipient antigen matching is based on OPTN antigen values and split equivalences policy as of 2018.

Figure IN 38. Total HLA A, B, and DR mismatches among deceased donor intestine transplant recipients, 2015-2019
Donor and recipient antigen matching is based on OPTN antigen values and split equivalences policy as of 2018.


Adult centers transplanted only recipients aged 18 years or older. Functionally adult centers transplanted 80% adults or more, and the remainder were children aged 15-17 years. Mixed included adults and children of any age groups. Pediatric center transplanted recipients aged 0-17 years, and a small number of adults up to age 21 years.

Figure IN 39. Number of centers performing adult and pediatric intestine transplants by center's age mix
Adult centers transplanted only recipients aged 18 years or older. Functionally adult centers transplanted 80% adults or more, and the remainder were children aged 15-17 years. Mixed included adults and children of any age groups. Pediatric center transplanted recipients aged 0-17 years, and a small number of adults up to age 21 years.


Annual volume data include recipients of all ages.

Figure IN 40. Annual intestine transplant center volumes by percentile
Annual volume data include recipients of all ages.


Based on annual volume data among recipients aged 18 or older.

Figure IN 41. Distribution of intestine transplants by annual center volume
Based on annual volume data among recipients aged 18 or older.


All recipients of deceased donor intestines, including multi-organ transplants.

Figure IN 42. Graft failure among transplant recipients of intestine without liver
All recipients of deceased donor intestines, including multi-organ transplants.


All recipients of deceased donor intestines, including multi-organ transplants.

Figure IN 43. Graft failure among transplant recipients of intestine with liver
All recipients of deceased donor intestines, including multi-organ transplants.


Graft survival estimated using unadjusted Kaplan-Meier methods.

Figure IN 44. Graft survival among deceased donor intestine transplant recipients, 2012-2014, by age
Graft survival estimated using unadjusted Kaplan-Meier methods.


Intestine graft survival estimated using unadjusted Kaplan-Meier methods.

Figure IN 45. Graft survival among deceased donor intestine transplant recipients, 2012-2014, by transplant type
Intestine graft survival estimated using unadjusted Kaplan-Meier methods.


Graft survival estimated using unadjusted Kaplan-Meier methods.

Figure IN 46. Graft survival among deceased donor intestine transplant recipients, 2012-2014, by metropolitan vs. non-metropolitan recipient residence
Graft survival estimated using unadjusted Kaplan-Meier methods.


Recipients are assumed to be alive with function unless a death or graft failure is recorded. A recipient may experience a graft failure and be removed from the cohort, undergo retransplant, and re-enter the cohort. IN, intestine without liver; IN-LI, intestine-liver.

Figure IN 47. Recipients alive with a functioning intestine graft on June 30 of the year, by age at transplant and procedure
Recipients are assumed to be alive with function unless a death or graft failure is recorded. A recipient may experience a graft failure and be removed from the cohort, undergo retransplant, and re-enter the cohort. IN, intestine without liver; IN-LI, intestine-liver.


Only the first reported rejection event is counted. Cumulative incidence is estimated using the Kaplan-Meier method.

Figure IN 48. Incidence of acute rejection by 1 year posttransplant among intestine transplant recipients by age, 2017-2018
Only the first reported rejection event is counted. Cumulative incidence is estimated using the Kaplan-Meier method.


Only the first reported rejection event is counted. Cumulative incidence is estimated using the Kaplan-Meier method. IL2-RA, interleukin-2 receptor agonist; TCD, T-cell depleting.

Figure IN 49. Incidence of acute rejection by 1 year posttransplant among intestine transplant recipients by induction agent 2017-2018
Only the first reported rejection event is counted. Cumulative incidence is estimated using the Kaplan-Meier method. IL2-RA, interleukin-2 receptor agonist; TCD, T-cell depleting.


Cumulative incidence is estimated using the Kaplan-Meier method. PTLD is identified as a reported complication or cause of death on the OPTN Transplant Recipient Follow-up Form or the Posttransplant Malignancy Form as polymorphic PTLD, monomorphic PTLD, or Hodgkin

Figure IN 50. Incidence of PTLD among recipients of intestine transplant without liver by recipient EBV status at transplant, 2007-2017
Cumulative incidence is estimated using the Kaplan-Meier method. PTLD is identified as a reported complication or cause of death on the OPTN Transplant Recipient Follow-up Form or the Posttransplant Malignancy Form as polymorphic PTLD, monomorphic PTLD, or Hodgkin's disease. Only the earliest date of PTLD diagnosis is considered. EBV, Epstein-Barr virus; PTLD, posttransplant lymphoproliferative disorder.


Cumulative incidence is estimated using the Kaplan-Meier method. PTLD is identified as a reported complication or cause of death on the OPTN Transplant Recipient Follow-up Form or the Posttransplant Malignancy Form as polymorphic PTLD, monomorphic PTLD, or Hodgkin

Figure IN 51. Incidence of PTLD among recipients of intestine transplant with liver by recipient EBV status at transplant, 2007-2017
Cumulative incidence is estimated using the Kaplan-Meier method. PTLD is identified as a reported complication or cause of death on the OPTN Transplant Recipient Follow-up Form or the Posttransplant Malignancy Form as polymorphic PTLD, monomorphic PTLD, or Hodgkin's disease. Only the earliest date of PTLD diagnosis is considered. EBV, Epstein-Barr virus; PTLD, posttransplant lymphoproliferative disorder.


Patient survival estimated using unadjusted Kaplan-Meier methods.

Figure IN 52. Patient survival among deceased donor intestine transplant recipients, 2012-2014, by transplant type
Patient survival estimated using unadjusted Kaplan-Meier methods.


Table IN 1. Demographic characteristics of candidates on the intestine transplant waiting list on December 31, 2019
Candidates waiting for intestines with and without liver on December 31, 2019, regardless of first listing date. Distance is computed from candidate's home zip code to the transplant center.
Characteristic IN, N IN, Percent IN-LI, N IN-LI, Percent
Age: < 6 years 93 68.4% 53 58.9%
Age: 6-17 years 19 14.0% 15 16.7%
Age: 18-34 years 15 11.0% 14 15.6%
Age: 35-49 years 8 5.9% 8 8.9%
Age: 50-64 years 1 0.7% 0 0.0%
Sex: Female 72 52.9% 34 37.8%
Sex: Male 64 47.1% 56 62.2%
Race/ethnicity: White 80 58.8% 52 57.8%
Race/ethnicity: Black 29 21.3% 17 18.9%
Race/ethnicity: Hispanic 19 14.0% 16 17.8%
Race/ethnicity: Asian 4 2.9% 5 5.6%
Geography: Metropolitan 120 88.2% 68 75.6%
Geography: Non-metro 16 11.8% 22 24.4%
Distance: < 50 miles 27 19.9% 23 25.6%
Distance: 50-<100 miles 10 7.4% 7 7.8%
Distance: 100-<150 miles 9 6.6% 10 11.1%
Distance: 150-<250 miles 22 16.2% 13 14.4%
Distance: ≥ 250 miles 66 48.5% 32 35.6%
Distance: Unknown 2 1.5% 5 5.6%
All candidates 136 100.0% 90 100.0%



Table IN 2. Clinical characteristics of candidates on the intestine transplant waiting list on December 31, 2019
Candidates waiting for intestines with and without liver on December 31, 2019, regardless of first listing date; multiple listings are collapsed. SGS, short-gut syndrome.
Characteristic IN, N IN, Percent IN-LI, N IN-LI, Percent
Diagnosis: Necrotizing enterocolitis 19 14.0% 4 4.4%
Diagnosis: Congenital SGS 29 21.3% 19 21.1%
Diagnosis: Non-congenital SGS 31 22.8% 29 32.2%
Diagnosis: Pseudo-obstruction 13 9.6% 2 2.2%
Diagnosis: Enteropathies 2 1.5% 5 5.6%
Diagnosis: Other/unknown 42 30.9% 31 34.4%
Blood type: A 46 33.8% 30 33.3%
Blood type: B 19 14.0% 15 16.7%
Blood type: AB 5 3.7% 1 1.1%
Blood type: O 66 48.5% 44 48.9%
IN medical urgency: Status 1 42 30.9% 47 52.2%
IN medical urgency: Non-urgent 38 27.9% 18 20.0%
IN medical urgency: Inactive 56 41.2% 25 27.8%
All candidates 136 100.0% 90 100.0%



Table IN 3. Listing characteristics of candidates on the intestine transplant waiting list on December 31, 2019
Candidates waiting for intestines with and without liver on December 31, 2019, regardless of first listing date; multiple listings are collapsed.
Characteristic IN, N IN, Percent IN-LI, N IN-LI, Percent
Transplant history: First 129 94.9% 74 82.2%
Transplant history: Retransplant 7 5.1% 16 17.8%
Wait time: < 1 year 28 20.6% 27 30.0%
Wait time: 1-< 2 years 21 15.4% 15 16.7%
Wait time: 2-< 3 years 12 8.8% 13 14.4%
Wait time: 3-< 4 years 15 11.0% 6 6.7%
Wait time: 4-< 5 years 12 8.8% 7 7.8%
Wait time: ≥ 5 years 48 35.3% 22 24.4%
Tx type: Intestine only 115 84.6% 0 0.0%
Tx type: Intestine-liver 0 0.0% 0 0.0%
Tx type: Intestine-pancreas 17 12.5% 0 0.0%
Tx type: Intestine-pancreas-liver 0 0.0% 82 91.1%
Tx type: Intestine-pancreas-liver-kidney 0 0.0% 8 8.9%
Tx type: Other 4 2.9% 0 0.0%
All candidates 136 100.0% 90 100.0%



Table IN 4. Intestine transplant waitlist activity, 2019
Candidates listed at more than one center are counted once per listing. Candidates who are listed, undergo transplant, and are relisted are counted more than once. Candidates are not considered to be on the list on the day they are removed; counts on January 1 may differ from counts on December 31 of the prior year. Candidates listed for multi-organ transplants are included.
Waiting list state IN IN-LI
Patients at start of year 147 101
Patients added during year 47 56
Patients removed during year 60 65
Patients at end of year 134 92



Table IN 5. Removal reason among intestine transplant candidates, 2019
Removal reason as reported to the OPTN. Candidates with death dates that precede removal dates are assumed to have died waiting.
Removal reason IN IN-LI
Deceased donor transplant 41 40
Living donor transplant 0 0
Patient died 4 11
Patient refused transplant 2 0
Improved, transplant not needed 7 6
Too sick for transplant 1 4
Other 5 4



Table IN 6. Demographic characteristics of intestine transplant recipients, 2019
Intestine transplant recipients, including retransplants. Distance is computed from recipient's home zip code to the transplant center.
Characteristic IN, N IN, Percent IN-LI, N IN-LI, Percent
Age: < 18 years 11 26.8% 21 52.5%
Age: 18-34 years 17 41.5% 5 12.5%
Age: 35-49 years 6 14.6% 5 12.5%
Age: 50-64 years 5 12.2% 8 20.0%
Age: ≥ 65 years 2 4.9% 1 2.5%
Sex: Female 25 61.0% 14 35.0%
Sex: Male 16 39.0% 26 65.0%
Race/ethnicity: White 26 63.4% 27 67.5%
Race/ethnicity: Black 10 24.4% 7 17.5%
Race/ethnicity: Hispanic 4 9.8% 5 12.5%
Race/ethnicity: Asian 1 2.4% 0 0.0%
Race/ethnicity: Other/unknown 0 0.0% 1 2.5%
Insurance: Private 14 34.1% 23 57.5%
Insurance: Medicaid 14 34.1% 9 22.5%
Insurance: Unknown 13 31.7% 8 20.0%
Geography: Metropolitan 36 87.8% 33 82.5%
Geography: Non-metro 5 12.2% 7 17.5%
Distance: < 50 miles 20 48.8% 10 25.0%
Distance: 50-<100 miles 1 2.4% 5 12.5%
Distance: 100-<150 miles 5 12.2% 2 5.0%
Distance: 150-<250 miles 4 9.8% 8 20.0%
Distance: ≥ 250 miles 8 19.5% 11 27.5%
Distance: Unknown 3 7.3% 4 10.0%
All recipients 41 100.0% 40 100.0%



Table IN 7. Clinical characteristics of intestine transplant recipients, 2019
Intestine transplant recipients, including retransplants. SGS, short-gut syndrome. MELD scores are given for intestine-liver candidates.
Characteristic IN, N IN, Percent IN-LI, N IN-LI, Percent
Diagnosis: Necrotizing enterocolitis 2 4.9% 3 7.5%
Diagnosis: Congenital SGS 4 9.8% 6 15.0%
Diagnosis: Non-congenital SGS 20 48.8% 12 30.0%
Diagnosis: Pseudo-obstruction 3 7.3% 1 2.5%
Diagnosis: Enteropathies 0 0.0% 1 2.5%
Diagnosis: Other/unknown 12 29.3% 17 42.5%
Blood type: A 16 39.0% 14 35.0%
Blood type: B 6 14.6% 6 15.0%
Blood type: AB 2 4.9% 1 2.5%
Blood type: O 17 41.5% 19 47.5%
Medical condition: Hospitalized in ICU 0 0.0% 7 17.5%
Medical condition: Hospitalized, not ICU 3 7.3% 6 15.0%
Medical condition: Not hospitalized 38 92.7% 27 67.5%
IN medical urgency: Status 1 32 78.0% 37 92.5%
IN medical urgency: Non-urgent 9 22.0% 3 7.5%
LI medical urgency: Status 1A 5 12.5%
LI medical urgency: MELD/PELD ≥ 35 12 30.0%
LI medical urgency: MELD/PELD 30-34 7 17.5%
LI medical urgency: MELD/PELD 15-29 14 35.0%
LI medical urgency: MELD/PELD < 15 2 5.0%
All recipients 41 100.0% 40 100.0%



Table IN 8. Transplant characteristics of intestine transplant recipients, 2019
Intestine transplant recipients, including retransplants.
Characteristic IN, N IN, Percent IN-LI, N IN-LI, Percent
Wait time: < 31 days 6 14.6% 11 27.5%
Wait time: 31-60 days 3 7.3% 4 10.0%
Wait time: 61-90 days 1 2.4% 1 2.5%
Wait time: 3-< 6 months 5 12.2% 10 25.0%
Wait time: 6-< 12 months 12 29.3% 9 22.5%
Wait time: 1-< 2 years 6 14.6% 1 2.5%
Wait time: ≥ 2 years 8 19.5% 4 10.0%
Donor type: Deceased 41 100.0% 40 100.0%
Transplant history: First 35 85.4% 33 82.5%
Transplant history: Retransplant 6 14.6% 7 17.5%
Tx type: Intestine only 33 80.5% 0 0.0%
Tx type: Intestine-liver-pancreas 0 0.0% 35 87.5%
Tx type: Intestine-liver 0 0.0% 1 2.5%
Tx type: Other 8 19.5% 4 10.0%
All recipients 41 100.0% 40 100.0%