What are parameters to consider when choosing an intestinal rehabilitation and transplantation center?

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When choosing an intestinal rehabilitaiton and transplantation team and center there are a number of parameters to consider, including:

• Center specializations and expertise.

• Location, distance from home, and relocation costs.

• Individual center requirements for patient proximity to center while on the waitlist and after transplant surgery (if pursuing transplant).

• Caregiver options and center requirements for caregiver support.

• Insurance coverage and network restraints.

• Transplant survival rates and graft outcomes.

• Outcomes of intestinal rehabilitation procedures and patient's ability to wean from TPN.

• Number of transplants and intestinal rehabilitation procedures the center performs each year.

In addition, meeting the team in person and considering team chemistry and trust is also important to be considered. You will want to trust the selected team explicitly when undergoing the rigorous process of evaluation, waitlisting, transplantation, and post-transplant care.

Oftentimes a patient is cared for in regards to any issues that may occur related to their intestinal rehabilitation or transplant by their intestinal team and will receive care from their team in some capacity for the rest of their lives.

Lastly, the patient is encouraged to consider their situation, level of illness, individual diagnosis, and find the best center for their personalized plan of care.

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What questions should you consider asking your transplant team and center? (No answers)

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• Do I have choices other than transplantation?

• What are the benefits and risks of transplantation?

• What does the evaluation process include?

• Can I register on the waiting list at more than one center?

• Who are the members of the transplant team?

• How many surgeons are available here to do my type of transplant?

• Is there a special hospital unit or floor for transplant patients?

• May I tour the transplant center’s units?

• Will I be asked to take part in research studies?

• How many of these types of transplants does this hospital or surgeon perform each year?

• How long have you been doing these transplants?

• What are the organ and patient survival rates for my type of transplant at this hospital and how does that compare to other hospitals?

• Does the hospital perform living donor transplants?

• Is a living donor transplant a choice in my case? If so, where will the living donor evaluation be done? What is the living donation process?

• Can I meet other transplant recipients?

• How long will I have to stay in the hospital after the transplant?

• What sort of appointments or tests will I have after the transplant?

Would you like these in a format to take with you to your first appointment? Sign-Up or Log-In to access our Pediatric and Adult Transplant Appointment Checklist and Questions Handout.

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Where can you find additional data and statistics about transplant centers in the US?

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• Visit OPTN for data reports on the national, regional, local, and center level. There are reports for the number of transplants and waiting list size, amongst many other parameters.
• Visit SRTR for median wait time and survival rates by transplant center as well as other and data reports.

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What questions should you consider asking your transplant team and center? (With sample answers)

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• Do I have choices other than transplantation? Your transplant team may recommend intestinal rehabilitation either medical or surgical. Learn more about this in our adult intestinal rehabilitation section or our pediatric intestinal rehabilitation section.

• What are the benefits and risks of transplantation? This will be explained to you during informed consent. Learn about the entire informed consent process and transplant evaluation here for adults and for a pediatric patient here.

• What does the evaluation process include? Learn about the transplant evaluation here for adults and for a pediatric patient here. It may differ center by center, but this provides a basic outline.

• Can I register on the waiting list at more than one center? Yes, as long as both centers agree. This is called multiple listing.

• Who are the members of the transplant team? Individualized based on center.

• How many surgeons are available here to do my type of transplant? Individualized based on center.

• Is there a special hospital unit or floor for transplant patients? Individualized based on center.

• May I tour the transplant center’s units? Individualized based on center. Ask your social worker, child life department, or transplant coordinator.

• Will I be asked to take part in research studies? Individualized based on center.

• How many of these types of transplants does this hospital or surgeon perform each year? Individualized based on center.

• How long have you been doing these transplants? Individualized based on center.

• What are the organ and patient survival rates for my type of transplant at this hospital and how does that compare to other hospitals? Individualized based on center. You can look up this information on your own by reviewing the SRTR reports.

• Does the hospital perform living donor transplants? Currently the only US transplant center that performs living intestinal transplants is the University of Illinois.

• Is a living donor transplant a choice in my case? If so, where will the living donor evaluation be done? What is the living donation process? See above.

• Can I meet other transplant recipients? Meeting in person may vary by center and most likely will be difficult in this new world of COVID-19.
  • Meeting virtually is possible through Transplant Unwrapped.
  • View our Support Programs Page to connect with others.
  • You can also read, watch, and listen to personal stories in our Learn From Others section.

• How long will I have to stay in the hospital after the transplant? Individualized based on center and patient. Individualized based on center and patient. From personal experience and general knowledge, on average, expect to spend at least a minimum of 2-4 weeks in the hospital after an intestinal transplant.

• What sort of appointments or tests will I have after the transplant? Individualized by center. Take a look at our post-transplant responsibilities page for adults or pediatrics to get an idea of what to expect.

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Intestinal Rehabilitation and Transplantation Centers in the United States

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​ Ann & Robert H. Lurie Children’s Hospital of Chicago ​ Boston Children’s Hospital ​ Cincinnati Children's Intestinal Care Center (CCICC) ​ Cleveland Clinic ​ Duke University Hospital ​ Henry Ford Hospital ​ Indiana University Hospital ​ Jackson Memorial Hospital Miami ​ Lucile Salter Packard Children’s Hospital at Standford ​ Medstar-Georgetown University Hospital ​ Mount Sinai Healthcare ​ Nebraska Medical Center ​ New York Presbyterian Hospital/ Columbia University Medical Center ​ Seattle Children’s Hospital ​ University of California Los Angeles (Ronald Reagan UCLA Medical Center) ​ University of Illinois (UI) Hospital (only living donor intestinal transplant in the US) ​ University of Pittsburgh Medical Center (UPMC) ​ UPMC Children’s Hospital of Pittsburgh ​​ Transplant Unwrapped is not recommending the transplant centers listed and cannot be held responsible for any treatment you may receive there. This list is for informational purposes only and does not imply that any center not listed is inferior.

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Pediatric Intestinal Rehabilitation Centers

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In addition to the centers listed above, here is a list of pediatric intestinal rehabilitation centers: All Children's Hospital Johns Hopkins Intestinal Rehabilitation Program Broward Health (Florida) Intestinal Rehabilitation Program Children's of Alabama Intestinal Rehabilitation Program Children's Hospital Colorado Intestinal Rehabilitation Program Children's Hospital of Orange County (CHOC) Intestinal Rehabilitation Program Children's Hospital fo Los Angeles Intestinal Rehabilitation Program Children's Mercy Kansas City Children's National Intestinal Rehabilitation Program Children's Health North Texas Intestinal Rehabilitation Program Children's Hospital of Philadelphia Intestinal Rehabilitation Program Columbia Intestinal Rehabilitation Program John R. Oishei Children's Hospital Intestinal Rehabilitation Program Masonic Children's Hospital Intestinal Rehabilitation Program Monroe Carell Jr. Children's Hospital Intestinal Rehabilitation Program Mott Children's Hospital Intestinal Rehabilitation Program Nationwide Children's Intestinal Rehabilitation Center Rady Children's Hospital San Diego Intestinal Rehabilitation Program Riley Children's Health Intestinal Rehabilitation Program SSM Health Cardinal Glennon Intestinal Rehabilitation Program Texas Children's Intestinal Rehabilitation Clinic UCSF Benioff Children's Intestinal Rehabilitation Program

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Helpful Downloads from Transplant Unwrapped

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Sign-Up or Log-In to Access: 1. Adult Transplant Appointment Checklist and Questions 2. Pediatric Transplant Appointment Checklist and Questions

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Helpful Website: Organ Procurement Transplantation Network (OPTN)

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Organ Procurement Transplantation Network (OPTN): The OPTN's secure transplant information database contains all national data on the candidate waiting list, organ donation and matching, and transplantation.

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