Evaluation for Intestine transplantation

A thorough and comprehensive multidisciplinary evaluation of patients with intestinal failure is essential to assess appropriate candidacy for transplantation and provide for the best possible outcome for these complex patients ( Table 2 ). Candidates must be assessed from the surgical, medical, and psychosocial perspectives by the transplant team and various consultants. The goals of the evaluation are to define the cause and extent of intestinal failure, evaluate any associated organ dysfunction, and determine appropriate therapy including other surgical options or alterations in medical management or transplantation.[41,42,43]

Intestine transplantation is reserved for those patients with permanent intestinal failure due to SGS requiring parenteral nutrition with no possibility of discontinuation. There are several absolute contraindications, including severe unresolvable cardiac, respiratory, and/or neurologic complications; multisystem organ failure; uncontrollable sepsis; human immunodeficiency virus (HIV), and malignancy outside of the intestine with metastasis.[42,43] Relative contraindications include physical debilitation, age greater than 65 years, or psychosocial problems such as poor family support or noncompliance. Candidacy with respect to relative contraindications are center-specific; these issues are usually addressed through a multidisciplinary conference in an effort to assist the patient and family as much as possible.

Patient Referral

The evaluation process usually begins with a referral by a local physician to a transplant coordinator at a transplant center. However, referrals by the family or patient are also common since general information about intestine transplantation is available through various support groups such as the Transplant Recipients International Organization (TRIO), Guardian Society Hirschsprung Disease the Children's Liver Association for Support Services (CLASS), and the Intestinal Diseases Foundation (IDF); their toll-free number is 1-877-587-9606. Information is also readily accessible through the Internet on Web sites of the various transplant centers as well as the United Network of Organ Sharing (UNOS).

The transplant coordinator generally discusses the patient's diagnosis, history, and current medical status with the referring physician and/or family member and then requests medical records, a complete history, a current physical examination, and recent test and laboratory results. The transplant physician reviews the medical information and discusses the case with the referring physician. If an evaluation is considered appropriate, the transplant coordinator will schedule the evaluation and testing for the earliest possible time.

Financial Counseling

The case is also referred to a transplant financial coordinator who determines insurance coverage for the evaluation and transplant. Financial coverage must be confirmed prior to transplant. The financial coordinator will work with the family to obtain coverage since some insurance companies do not recognize intestine transplantation as a feasible treatment for SGS. A recent landmark decision by the Health Care Financing Administration (HCFA) provides for Medicare coverage of the costs of intestine transplantation if performed in an approved facility (effective as of April 1, 2000).[44] Third-party payers may also consider intestine transplantation as an accepted treatment for irreversible intestinal failure as a result of HCFA's decision. In addition, families often find fundraising for their personal expenses to be helpful. Relocation to a transplant center for several months poses a significant financial burden to families as they try to maintain 2 households and associated expenses.

The Evaluation

The transplant evaluation process is somewhat center-specific, but is usually conducted over a 3- to 5-day inpatient hospitalization. Some centers evaluate candidates on an outpatient basis in the outpatient transplant clinic over several days. Patients who have previously been evaluated at another center can usually be evaluated in an abbreviated manner using recent test results obtained during their initial evaluation. At most centers, a transplant coordinator facilitates the referral for evaluation and provides information to the family regarding UNOS listing and the transplant process, and is primarily responsible for coordinating the recipient's outpatient care both pre- and posttransplantation.

Efforts are made to schedule testing, consultants, and procedures in advance to minimize hospitalization and to prepare the patient and family for the evaluation. The evaluation includes a thorough assessment of the candidate through laboratory testing, diagnostic procedures, and consultant evaluations focusing on anatomy of the GI tract, nutritional status, hepatic function, vascular patency, infection history and immunologic status, psychosocial issues, and child development. A thorough history and physical examination is completed on all patients, paying particular attention to the etiology of intestinal dysfunction, previous surgeries, and infectious history. A chest x-ray, electrocardiogram, and echocardiogram are obtained.

Evaluation of the GI tract anatomy. Upper and lower GI barium studies are done to ascertain bowel length and any abnormalities to determine the type of transplant procedure to be performed and the required surgical anastomoses. GI motility and gastric emptying are assessed in patients with functional abnormalities. Absorption is evaluated in patients with longer segments of residual bowel through D-xylose testing and fecal fat absorption to determine whether TPN can be weaned and enteral feedings increased to enhance or promote intestinal adaptation.

Nutritional status. The nutritional assessment comprises a meticulous feeding history, assessment of caloric intake, and measurement of growth parameters. This assessment is particularly crucial in infants and children so that optimal calories for growth and development can be maintained. A feeding history in infants and children should review formulas and enteral and oral feedings to assess for tolerance, absorption, and growth. Infants and children should also be evaluated for oral aversion and abnormal oral or eating behaviors such as pica, excessive oral intake of water, or bulimia. Consultation and follow-up with occupational therapy, speech therapy, developmental specialists, and/or psychiatry may be indicated. It is important to keep in mind that without appropriate intervention and therapy, abnormal behaviors will continue following transplantation. Since one of the primary outcomes of intestine transplantation is for the patient to receive all required calories by mouth, these problems must be identified and addressed as soon as possible so the child will progress toward normal eating patterns in both the pretransplant and posttransplant periods.

Caloric intake is measured through assessment of the TPN solution and enteral and oral feedings. Laboratory values related to nutritional assessment are obtained, including electrolytes, blood urea nitrogen, creatinine, calcium, magnesium, phosphorus, zinc, trace elements, cholesterol, triglycerides, and levels of vitamins A, D, E, K, and B12.

Growth and weight maintenance is assessed through measurement of height, weight, and skin folds. Head circumference is measured in infants and young children with an evaluation of their growth curve. Every effort is made to optimize the nutritional management of these patients during the waiting period for transplantation.

Assessment of hepatic function. It is essential to evaluate for liver dysfunction since these patients rely primarily on TPN to meet nutritional requirements. Laboratory values related to liver function are obtained, including an alanine aminotransferase, aspartate aminotransferase, gamma glutamyl transpeptidase, direct and indirect bilirubin, albumin, prothrombin time, partial thromboplastin time, alpha-fetoprotein, platelets, ammonia, and Factors V and VII. An ultrasound of the liver and abdomen is obtained to assess liver size, vasculature, and evidence of portal hypertension. Portal hypertension is also diagnosed through history or bleeding esophageal varices, splenomegaly, ascites, thrombocytopenia, and caput medusae. An upper endoscopy is obtained if the patient has had recent esophageal bleeding. A liver biopsy may also be performed to establish baseline hepatic injury. The severity of liver injury on biopsy correlates with survival in that intestine transplant candidates with bridging fibrosis have a 53% 1-year survival and those with cirrhosis have only a 30% 1-year survival.[27] Maintenance of liver function is critical considering there is an average wait of 10 months for intestine transplantation.[25] Strategies utilized to promote and maintain liver function include decreasing and/or cycling TPN, adding or increasing enteral feedings, and administering ursodioxycholic acid.

Vascular patency. Evaluation of the vasculature begins with a complete history of the number of intravenous (IV) line placements, locations, durations, and reasons for replacement. An ultrasound of the great vessels is obtained to evaluate the splanchnic venous anatomy as well as the internal jugular, subclavian, and iliac veins, which are the primary routes for vascular access.[43] Angiography may be required in some cases. Since a majority of patients require vascular access for up to 1 year posttransplantation, line access is crucial. If any occlusions of the primary vasculature are found, confirmation is obtained through magnetic resonance imaging. Vascular occlusion is not necessarily a contraindication for intestine transplantation however, since a multivisceral transplantation may be performed.[43]

Infection history and immunologic status. A detailed infectious history is obtained to assess the etiology and frequency of infection, pathogens, response to treatment, and resistant organisms. All potential intestine transplant candidates are screened for active infection, and cultures are obtained as indicated. Cultures of the blood, urine, stool, throat, and ascitic fluid may be obtained for bacterial, fungal, or viral pathogens. Blood is obtained for a complete blood count with differential, ABO compatibility, tissue typing, cross matching, and to screen for exposure to hepatitis C virus, hepatitis B virus, and HIV. IgG and IgM titers for cytomegalovirus (CMV), Epstein-Barr virus (EBV), herpes zoster, varicella, measles, mumps, and rubella are also obtained. The patient is also assessed for immunologic deficiencies. Since there is an association between immunodeficiency and intestinal atresia, quantitative immunoglobulins are obtained in patients with this diagnosis.[27]

Additional consultations. Other consultations completed for evaluation include cardiology to rule out cardiac abnormalities or contraindications to surgery, anesthesiology to review previous responses to anesthesia and surgery, pulmonology for patients with respiratory complications such as bronchopulmonary dysplasia or cystic fibrosis, and/or neurology for patients with seizure disorders or neurologic impairments.

Psychosocial evaluation. A psychosocial evaluation is crucial to assess for the patient's and family's ability to cope with the rigors of the intestine transplant process -- from the stress of the waiting period through an often prolonged hospitalization and relocation to the transplant center, followed by the return home with the task of adapting to the demands of a chronic condition. A thorough evaluation of the patient's and family's support systems, the family's ability to care for the transplant recipient, and their comprehension of the transplant process must be completed. The history of adherence to care requirements and compliance issues are evaluated to determine the ability of the patient and family to succeed in this challenging procedure.

Although the roles and involvement of the various transplant specialists in the psychosocial evaluation vary by center, most candidates and families meet with several consultants.

A clinical nurse specialist addresses the educational needs of the patient and family and can also act as a consultant to assess developmental and psychosocial function and provide support and information during the hospitalization.

A clinical psychologist or psychiatrist completes a psychiatric evaluation of the patient and family, examining the psychiatric history, family functioning, physical functioning, coping skills, and family support. Recommendations for counseling, medications, and supportive services may be proposed.

The social worker completes an assessment of patient and family functionality and provides psychosocial care and support for transplant candidates and families. The family is guided in making referrals to financial assistance programs and support groups. The social worker facilitates participation in support groups and follow-up counseling or other programs as indicated. Families are also assisted with regard to a local residence and expenses and child care and travel expenses in preparation for relocation to the transplant center.

Consultants evaluate the compliance history of the patient and family with regard to medical follow-up, adherence to care routines, and cooperation with the medical team. Noncompliance following kidney, heart, and liver transplantation results in significant morbidity and mortality[9,45,46,47,48] and is an even greater concern following intestine transplantation, given the extensive and prolonged care and daily management routines these patients require. End-stage organ disease, surgery, and postoperative recovery for intestine transplantation appear to be more stressful on the family than observed with liver, kidney, or heart transplantation.[49]

During the evaluation, patients and families must acquire an understanding of posttransplant care requirements and recognize their ability to provide that care. If patients or families are assessed to be at high risk for failure as a result of the psychosocial evaluation, appropriate interventions are implemented such as patient and/or family counseling, medical compliance contracting, in-home social service support, or referral to a family services agency for child care assistance or possibly foster or adoptive care for the child.

Children undergoing evaluation for intestine transplantation may also be assessed from the developmental standpoint by a child development therapist, child life specialist, physical therapist, occupational therapist, and/or speech therapist. The majority of infants with SGS have had prolonged hospitalizations with rare or limited opportunities for normal infant development because of repeated surgeries, frequent episodes of sepsis and other acute illnesses, limitations of their environment, and multiple caregivers. Many patients present with significant delays in gross motor skills. A baseline assessment is important to direct therapies to accomplish achievable goals pretransplantation and to plan for further therapy as the child recuperates after transplantation.

Outcome of Evaluation

The outcome of the intestine transplantation evaluation is determined through a multidisciplinary review, and recommendations are discussed with the family at the conclusion of the evaluation. If a patient does not meet listing criteria, recommendations for care with an alternative management plan are discussed. If accepted as a transplant candidate, the patient is listed with UNOS according to established criteria. Recommendations for medical maintenance are made to the referring physician and routine communication between the home hospital, physician, and family is established so that the transplant center is continuously aware of the patient's medical status. Plans and contacts are confirmed for transportation to the transplant center when an organ is available. Follow-up with other services, therapies, or counseling is also implemented and reviewed periodically.

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