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Intestinal Transplant

Evaluation and the Waitlist

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Section 1: Transplant Evaluation

Transplant Evaluation

The evaluation process includes a thorough assessment of your child with numerous tests and procedures that allows the transplant team to gain valuable information about the health status of your child. The results and information that is obtained from this evaluation helps the transplant team determine if a transplant is the best way to treat your child. No two intestinal transplant evaluations are alike, however, there is a basic backbone structure that is followed and then catered toward your child’s individual needs.

Possible Evaluation Appointments

Transplant surgeon: The doctor who performs the transplant surgery. Gastroenterologist: A gastroenterologist is a doctor who specializes in the digestive system. You may already be familiar with gastroenterology because of your child's intestinal disease. A gastroenterologist will assess your child's gastrointestinal tract (digestive system). Anesthesiologist: This is a doctor that puts your child to sleep during the transplant surgery. They may examine your child during the evaluation to assess their airway and make sure it is safe to put your child asleep. Cardiologist: This is a doctor that will assess your child’s heart function. Infectious Disease Physician: This is a specialized doctor who will review your child’s past infection history, review immunization records and determine which vaccinations are required, provide education on preventing infections, and provide guidance on travel safety precautions. Psychologist or Psychiatrist: You and your child and maybe other family members will probably meet with a psychologist or psychiatrist for the psychological evaluation. They will also be available to talk with you or your child throughout the transplant process. Transplant Nurse Coordinator: This is the person who is with you from the beginning of the evaluation and throughout the transplant process. Your coordinator helps to communicate information between you and other members of the transplant team and helps educate you and your family about intestinal transplantation and what to expect at each step of the process. Dietician: You and your child will meet with a transplant dietician before and after transplant. The transplant dietician will assess your child's nutritional status and manage your child's nutrition throughout the transplant process. Pharmacists: Because of the immunosuppressant medications your child will take, you will become familiar with the pharmacist. They are a vital part of the transplant team. They will work closely with the transplant surgeons to make sure your child is getting the right type and amount of medicine to keep your child healthy and his or her transplant strong. Social Worker: A social worker helps make the transplant process easier for your family by providing emotional and social support. If you do not live close to your transplant center, your social worker can help you find affordable housing in the area or find financial assistance or support programs. Financial Coordinator: You will be assigned a financial coordinator who can assist you with the financial part of your child's intestinal transplant. This may mean helping navigate your way through the insurance system. If you need to raise funds for your child's transplant, the financial coordinator can help guide you through the fundraising process. Child Life Specialist: This is a transplant team member that helps your child and family adjust to the hospital experience. They will also help you deal with anxiety and help you develop positive coping skills. Occupational/Speech Therapy: If your child has an oral aversion, an occupational and speech therapist may work with your child to overcome it. Therapy may start before transplant, so once your child has a new intestine, your child will be more likely to meet nutritional requirements eating and drinking by mouth rather than intravenous feeds. Physical Therapist: A physical therapist may evaluate your child before transplant and recommend exercise and physical activity plan to prepare for the surgery. After the transplant, a physical therapist will develop an exercise program for your child. Physical activity is encouraged to strengthen your child's body and may help the healing process both mentally and physically.

Possible Evaluation Tests and Procedures

Routine Assessment: Complete history and physical exam. Growth and Development: The transplant team will evaluate your child's growth and development. This may mean meeting with individuals from the physical therapy, occupational therapy, speech therapy, child life, and child development departments. Psychological and Social Evaluation: You and your child may meet with a psychologist or psychiatrist and a social worker. A transplant is a big operation and a lifelong commitment on the part of you and your child. Many changes to you and your child’s life will occur after transplant that will have to be maintained for the remainder of his or her life and will impact not only your child, but also your family. The goal is to make sure your child has the greatest chance of success with his or her transplant. The transplant team wants to make sure the child has enough family support before and after the transplant to accomplish this goal. Gastrointestinal Assessment: A barium swallow and/or barium enema may be performed to examine the bowel length, intestinal defects, anatomy or structure, and functioning of the intestine via a series of x-ray and ingested contrast dye. Nutritional Assessment: Nutritional status is very important to assess during an intestinal transplant evaluation. Many children with intestinal problems who are candidates for transplantation often have problems with unusual eating habits or oral aversion. Occupational therapists or speech therapists may be consulted to help your child overcome difficulties your child has with eating and drinking so your child will be prepared to eat by mouth after transplant. Blood tests for nutritional status will be conducted to assess vitamins and minerals, such as measuring the levels of fat-soluble vitamins A, D, E, and K. Hepatic (Liver) Function: Blood tests will be used to assess the function of the liver. An ultrasound or CT scan may also be used to assess the liver and other internal abdominal organs. Your child may need to undergo a liver biopsy (taking a small sample of the liver) to assess the status of the liver’s function and determine if your child will need to have the liver transplanted in addition to the intestine. Vascular Patency: This means examining your child’s blood vessels to make sure that they are open and not obstructed or blocked. This may be done by using an ultrasound, a CT scan, or an angiogram. During an angiogram, a dye is injected into your child’s blood vessel and observed via x-rays taken to see how well the dye moves through the vessels. This information is important to determine if any vessels are blocked that may be needed for transplant. Cardiac (heart) Assessment: It is important to make sure that your child’s heart is functioning correctly and make sure that there are not any structural defects within the heart that have gone undetected. Your child will probably have an electrocardiogram (EKG) to check the electrical activity of the heart. This is a painless procedure that involves placing sticky electrodes on the skin and measuring the electrical activity. Your child will also probably have an echocardiogram which is a special ultrasound that looks at the anatomy of the heart to look for structural defects and see the heart beating in real time. Respiratory (Lung) Assessment: Your child will have a chest x-ray to make sure the lungs are clear. Your child may undergo a chest CT scan to get an even better image. History of Infection and Immune System Assessment: Since the immunosuppressant medicines transplant recipients take weaken the immune system, it is important to have a good idea of how your child's immune system has worked in the past. Your transplant team will probably ask you for a thorough history of your child’s illnesses and vaccine status. Blood tests will also help assess the status of your child’s immune system. Blood and Tissue Type: Blood tests will be done to determine your child’s blood type (A, B, O, or AB; positive or negative) and tissue type. For intestinal transplant matching, blood type is what is considered when matching organs. Tissue typing may be considered if your child is being matched with a liver.

Selection Committee

Once your transplant evaluation is complete, your child's transplant coordinator will present their case in front of the Intestinal Selection Committee to determine the best possible recommendations for ongoing care and intestinal transplant surgery.

Recommendations for transplant are made by the committee after review and discussion of test results and consultations:

  • Intestine transplant may be recommended, and your child will be formally listed with UNOS.
  • Transplant may be deferred and your child will not be listed because additional information or tests are needed, medical management strategies may be indicated, or current psychosocial concerns are significant and must be resolved before listing.
  • In some cases, transplant may be denied due to medical issues that may affect survival or your child will benefit from medical or other surgical interventions rather than transplant.
The members of the committee will vary by center and patient diagnosis, examples of members includes:
  • Transplant surgeons
  • Gastroenterologists
  • Nutritionists
  • Social workers
  • Ethicists
  • Psychiatrists
  • Mid-level providers
  • Advanced practice nurses
  • General surgery
  • Pharmacists
  • Anesthesia
The committee will recommend the best options for your child's care, and your coordinator will then relay this information to you. Note: For most transplant centers and states, the team would officially list your child with UNOS, the national organ waiting list. If your child is pursuing an intestinal or multivisceral transplant in any state other than Ohio, please proceed to the section on "Waiting List" to continue reading; however, if you are pursuing a transplant in the state of Ohio, then read the portion of information below stated "Ohio Consortium."

Ohio Solid Organ Transplant Consortium (OSOTC)

  • If your child is accepted as a candidate for transplant at a transplant center in Ohio, your child’s information will be sent to the Ohio Solid Organ Transplant Consortium (OSOTC) for further review. This process requires the transplant physician to write a letter to OSOTC, which may take 2-4 weeks.

  • The primary purpose of the Ohio Solid Organ Transplantation Consortium is to ensure equitable access to quality medical care for those most likely to benefit from transplantation, regardless of ability to pay.

  • Once OSOTC has granted approval and your insurance company has approved your child, information is then submitted to United Network for Organ Sharing (UNOS) for listing on the national waiting list.

Intestinal and Multivisceral Transplant Team

The intestinal and multivisceral transplant team consists of many members to make sure your child receives the best care possible. The team may include a:

  • Transplant Surgeon
  • Gastroenterologist
  • Hepatologist (Liver Doctor)
  • Registered Dietician
  • Infectious Disease Specialist
  • Cardiologist (Heart Doctor)
  • Transplant Nurse Coordinator
  • Mid-level Clinicians (Physician Assistant, Nurse Practitioner)
  • Transplant Pharmacist
  • Physical Therapist
  • Occupational Therapist
  • Speech-Language Pathologist
  • Pathologist
  • Psychologist or Psychiatrist
  • Social Worker
  • Financial Coordinator
  • Child Life Specialist

Section 2: Informed Consent

Informed Consent

Informed consent is a discussion between the health care provider and patient explaining:

  • Information about how and where a procedure or treatment is done and how long it takes.
  • The benefits and possible risks or side effects of the treatment/procedure.
  • The benefits and possible risks of other treatment options or alternatives.
  • The benefits and possible risks of not having any treatment.
  • After the discussion, an informed consent document is signed stating these things have been reviewed.

Who makes decisions for children under the age of 18?

Children under the age of 18 are not permitted to give consent for medical procedures and treatments. Parents are typically the primary decision-makers for their children. Parents give permission for their child to undergo procedures and treatments. The parent giving consent must be deemed competent- in other words, be able to understand the information being presented.

What is assent?

  • In pediatrics, children who are old enough to understand medical discussions are sometimes asked to give assent for care.
  • Assent means that the child is agreeing to the treatment or procedure. Children can also dissent, which means they do not agree to participate.
  • The age at which assent is requested varies by institution and can be as young as 7 years old.
  • Assent is not required by law, but many institutions require children who are developmentally and cognitively able, to participate in decision making.
  • You can ask for assistance in assessing your child’s ability to give assent from pediatric social workers, psychologists, and child life specialists.

What is the informed consent document?

The parent(s) providing consent will be asked to sign an informed consent document for each procedure, treatment, or clinical trial. Review the document and ask any questions before you sign. This form is to protect your autonomy (decision making ability) and to confirm that you have not been forced to receive any treatment or procedure. Informed consent is the law. State laws can dictate the format of these forms, so they may vary from state to state. You should not feel pressured or rushed to provide consent. Take time to review the document and ask questions. You can change your mind about the treatment at any time, even after you have signed the consent or treatment has started. If you struggle with reading or writing, it is important to inform the healthcare provider so that they use other methods to help you understand the treatment/procedure. Many medical professionals use medical terminology that the general public doesn’t understand, so do not hesitate to ask for further clarification of anything you do not understand. If English is not your primary language, a Certified Medical Interpreter should be present for the informed consent discussion and should translate the informed consent form for you.

What questions should I ask before signing consent for my child?

Questions to Ask Your Transplant Team Before Signing Consent for Your Child:

  • What are my child’s choices other than transplant?
  • What are the risks and benefits of transplant for my child?
  • What does the evaluation process include?
  • How long do most patients with my child’s blood and organ type wait at this hospital for this type of transplant?
  • How long has this hospital and these surgeons been doing this type of transplant?
  • How many of these types of transplants does this hospital or surgeons perform each year?
  • Is my child allowed to be listed at more than one transplant center (e.g. multi-listing)?
  • What are the organ and patient survival rates for my child’s type of transplant at this hospital and how does that compare with the survival rates of the rest of the country?
  • How does the medical team decide whether or not to accept an organ for my child?
  • How long will we have to stay in the hospital and the area after my child’s transplant?
  • What is the extent of appointments and tests that my child will have to endure after his or her transplant?
  • What are the costs should we expect associated with transplant and what financial assistance is offered?

Section 3: The Waitlist

Organ Matching

  • The United Network for Organ Sharing (UNOS) is the organization that coordinates the nation’s organ transplant system. Under contract from the federal government, UNOS operates the Organ Procurement and Transplantation Network (OPTN), which serves to maximize the use of deceased organs and collect and analyze data pertaining to the patient waiting list, transplants, and organ matching.

  • Previously, for liver and intestinal organ allocation, UNOS had divided the US into 11 geographic regions to help facilitate transplantation. Within each region there were organ procurement organizations (OPOs) that served to increase the number of registered donors and coordinate the donation process. There are a total of 58 OPOs in the US. Regions.

  • In February, 2020, the organ allocation policies changed to distribute organs based on acuity circles. This bases off organ distrbution on nautical miles (NM) rather than geographical boundraies. You can read more about the implementation and policies here.

Basics of the Waiting List

  • The waiting list is a computer database that contains medical information on every person who is waiting for every type of organ transplant in the US and Puerto Rico.

  • Your child does not have a number ranking for transplant and does not move up and down on the list every time another child receives a transplant.

  • Each organ has its own allocation criteria. For intestines priority is based on clinical or medical status and geography. There is no way of knowing how long your child may be on the waiting list.

  • Once your child’s name is placed on the national waiting list, you may feel like your family has moved from one period of uncertainty to another.

  • It may take months to years for your child to receive the transplant that he or she needs.

  • The waiting period can be a very difficult time for your child and your entire family.
    • It is important to try and live as normal of a life as possible during the waiting period, while still remaining prepared as the ‘call’ may come at any time.

Waiting Status

There are 3 status designations on the intestinal transplant waiting list as of UNOS most recent policies in 2020: 1. Status 1: To assign an intestine candidate status 1, the candidate’s transplant program must submit a Status 1 Justification Form to the OPTN. A candidate may be assigned status 1 if the candidate has any of the following conditions:

  • Liver function test abnormalities.
  • No vascular access through the subclavian jugular, or femoral veins for intravenous feeding.
  • Medical indications that warrant intestinal organ transplantation on an urgent basis.
2. Status 2: Any active candidate that does not meet the criteria for status 1 must be registered as status 2. 3. Inactive Status (also known as Status 7): If the candidate is temporarily unsuitable for transplant, then the candidate’s transplant program may classify the candidate as inactive and the candidate will not receive any intestine offers.
  • Please note: Policy 7.2 waiting time as of July 1, 2020, inactive candidates will accrue waiting time while inactive for up to a maximum of 30 cumulative days.

Removal From Waiting List

In some cases, a patient that was once a transplant candidate is no longer a candidate for transplant. There are two main reasons why your child may be removed from the transplant list:

1. Your Child’s Health Improves: Your child’s health and function improves and no longer qualifies for transplant. In the event that your child’s health declines in the future, he or she may be re-listed for transplant.

2. Your Child’s Health Declines: Your child’s health and function declines to the point that it is no longer safe to perform the transplant surgery. If your child’s health improves in the future, he or she may be placed back on the list.

Getting the Call

When an organ becomes available and is suitable for your child, you will receive a phone call for your child. Timing is very important and your child’s coordinator will tell you when you need to be at the transplant center. After arriving to the hospital your child will be admitted.

The preoperative testing consists of a chest X-ray, EKG, and comprehensive lab work. When appropriate, your child will be transported to the operating room. You and your family will be directed by the support staff to a waiting area and periodic updates will be provided while you wait for your child’s surgery to be completed.

Dry Run

Sometimes the transplanted organ is unable to be used and you may be sent home. This is known as a dry run. This can be very disappointing, but you and your child should have an understanding before transplant that this is very common. The transplant surgeons are looking out for your child’s best interest and will only give your child the most suitable organs.

Section 4: Additional Resources

Helpful Downloads from Transplant Unwrapped

Sign-Up or Log-In to Access These Downloads: 1. Evaluation Appointment Table: Help understand and keep track of all of your child's evaluation appointments. 2. Evaluation Test and Procedure Table: Help understand and keep track of all of your child's evaluation tests and procedures. 3. Lab Value Chart: Help understand lab tests and record your child's normal levels.

Transplant Unwrapped Kid's Activity Book on Intestinal Transplant

Kids Activity Book: Help explain intestinal transplant to your child with fun activities. Coming Soon: Transplant Unwrapped for Kids. Sign-Up to receive updates.

Transplant Unwrapped: Learn From Others

Learn From Others: Read stories, watch interviews, and listen to audio from numerous members of the intestinal community on a variety of topics. Useful for This Section: Learn from Others- Patient Q & A- Part Four: The Waitlist and Getting the Call

Page References.

References here.