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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.