Center for Advanced Intestinal Rehabilitation, Children’s Hospital, Boston

The Center for Advanced Intestinal Rehabilitation (CAIR) at Children’s Hospital Boston is a multidisciplinary program that offers coordinated nutritional, medical, and surgical therapy, with the goal of providing the quality care to patients with intestinal failure.

The CAIR program was founded in 1999 and over 150 patients with short bowel syndrome have been treated at CAIR. Survival for these patients has exceeded 90 percent. In the 2006–2007 fiscal year, the CAIR program had 695 outpatient encounters and managed 132 admissions. The CAIR program members include experts in the fields of nutrition, social work, nursing, pharmacy, gastroenterology, surgery, and liver/intestinal transplantation; all program members have a specific interest in the integrated management of intestinal failure.

The team actively participates in research focused on the treatment and understanding of short bowel syndrome and has made major contributions to the field, including the development of a new bowel lengthening procedure (the STEP operation) and the development of a novel, potentially liver-protective, parenteral nutritional formula based on omega-3 fatty acids. (See “Parenteral Nutrition–Associated Liver Disease and the Role of Lipid Emulsions” )

CAIR program members include: Tom Jaksic, MD, PhD, Surgical Director; Christopher Duggan, MD, MPH, Medical Director; Sharon Collier, RD, Dietitian; Kathleen Gura, PharmD, BCNSP, Pharmacist; Julie Iglesias, RN, MSN,CPNP, Nurse Practitioner, CAIR Coordinator; Daniel Kamin, MD, Medical Director, Intestinal Transplantation; Heung Bae Kim, MD, Surgical Director, Intestinal Transplantation; Clifford Lo, MD, PhD, Home PN Physician; Mark Puder, MD, Surgeon; and Denise Richardson, RN, Home PN Nurse.

Consultations to the CAIR program can be arranged by phone at 617-355-5275 or by e-mail at gabriela.ardon@childrens.harvard.edu. The CAIR Web site address is www.childrenshospital.org/cair.

Cleveland Clinic – Cleveland, Ohio      

The Cleveland Clinic Nutrition Support Team (NST) and Home Parenteral Nutrition (HPN) program was established in 1975 by Ezra Steiger, MD, who serves as the Acting Director of the NST and Director of the Intestinal Rehabilitation Program founded in 2001. Le-Chu Su, MD, PhD, a gastroenterologist, joined the NST in 2004 and works with the team to oversee the management of patients requiring PN and/or intestinal care. Dr. Cristiano Quintini, a liver and small bowel transplant surgeon, joined the Cleveland Clinic NST in August 2007. Under his direction, the Cleveland Clinic has started to evaluate patients for intestinal and multivisceral transplantation.

The home parenteral nutrition (HPN) program at the Cleveland Clinic is one of the largest HPN programs in the United States. There are presently over one hundred HPN consumers being cared for each day. The efforts of the program are supported by two dietitians, two nurses, and a pharmacist, social worker, case manager and secretary. In addition, the team works closely with interventional radiologists with expertise in catheter placement and infectious disease specialists who help manage catheter infections.

The Cleveland Clinic Intestinal Rehabilitation and Transplantation Program offers a comprehensive, multidisciplinary approach to the treatment of severe gastrointestinal dysfunction. An extensive assessment is performed to determine the absorptive function of the gastrointestinal (GI) tract and to determine if any nutritional deficiencies have developed. Individualized dietary instruction is provided to teach patients about the diet that will be most readily absorbed. Medications and supplements are prescribed to improve digestive and absorptive function of the remaining bowel and consideration is given to the use of growth factors to stimulate bowel adaptation. Patients are also evaluated to determine the need for further surgical procedures including operations to restore intestinal continuity, lengthen remaining intestine, and reconstruct or reverse previous surgical procedures.

A visit to the Cleveland Clinic Intestinal Rehabilitation and Transplantation program gives patients access to internationally recognized expertise in nutrition support, gastroenterology, colorectal surgery, general surgery and transplantation. Colorectal and general surgeons and gastroenterologists work with the NST to manage the medical and surgical needs of patients with stomas, fistulas, obstructions and inflammatory bowel disease. The Cleveland Clinic NST and its supporting departments and programs also lead research in the area of nutrition support and intestinal failure to advance the understanding of short bowel syndrome and explore options to prevent and treat complications of PN. Patients unable to adequately respond to therapeutic attempts at intestinal rehabilitation or patients with severe PN-related complications have the option of undergoing intestinal or multivisceral transplantation at the Cleveland Clinic.
 

Intestinal Rehabilitation and Liver/GI Transplant Division
University of Miami, Miller School of Medicine

The Program for Intestinal Rehabilitation and Liver-GI Transplantation was started in 1994, when Dr. Andreas Tzakis joined the University of Miami as director of the program.

A combined effort between the Department of Surgery, Division of Pediatric Surgery and Division of Liver-GI Transplant, plus the Department of Pediatric Gastroenterology allows a multidisciplinary approach to parenteral nutrition patients, resulting in multimodal therapeutic strategies.

Patients with intestinal dysfunction are evaluated and offered medical therapies with intestinal adaptation protocols (with enteral and parenteral nutrition), in collaboration with a team of dietitians and gastroenterologists. Surgical techniques of bowel lengthening (including STEP procedure) and reconstruction are available to complement medical management.

In addition, the center offers alternative surgical techniques such as intestinal auto-transplantation. Finally, intestinal and multivisceral transplantation is offered for those patients with irreversible intestinal failure. This center performs over half of the multivisceral transplants in the nation.

      The adult liver/GI transplant associate director is Seigo Nishida, M.D., and the pediatric liver/GI transplant associate director is Tomoaki Kato, M.D. More information about the program can be found at their Web site at http://www.surgery.med.miami.edu/livergi/index.asp or by phone at (305) 355-5000.

Mayo Clinic – Rochester, MN

  The home parenteral nutrition (HPN) program at the Mayo Clinic was started in 1972 when the first patient was sent home on PN by Richard Fleming, MD, a gastroenterologist. A second patient was discharged in 1975 and in 1976 four more patients were added to the program. At the present time, Darlene Kelly, MD, PhD is the gastroenterologist and nutritionist overseeing the program in Rochester, MN. Other members of this specialized team include a gastroenterologist who takes over when Dr. Kelly is out of town; and a Nurse Coordinator, who is the link between Dr. Kelly and the patients. There is also a pharmacist, a social worker, a dietitian and the nurse educators who train new patients. Mayo has vascular radiologists and surgeons who specialize in catheter placement and problems, and, last but certainly not least, a secretary. This team of people works with each person from the time they are first diagnosed as needing long term PN.

  The program in Minnesota has an average of 85 to 90 consumers at any one time, and Dr. Kelly has calculated that the team has worked with consumers who have a total of 1,480 years of catheter experience.

  When asked what the benefits would be of a center of  experience, Dr. Kelly felt the following was true. “This is a team of people who have an express interest in HPN and continue to be educated in this area. They network with other centers nationally and internationally and work to keep themselves at the cutting edge of the therapy. They work to be available to their consumers. They act as a resource to other physicians in the field.” 

Northwestern Memorial Hospital

            Dr. Robert Craig established one of the first home parenteral nutrition (HPN) programs at Northwestern Memorial Hospital (NMH) in 1972, and continues to direct the nutrition support service. Dr. Alan Buchman, an adult gastroenterologist specialized in intestinal failure and inflammatory bowel disease, directs NMH’s Intestinal Rehabilitation Program. He works in close collaboration with Dr. Valeria Cohran, a pediatric gastroenterologist with special interest in Intestinal Failure and Transplantation, of Children’s Memorial Hospital (CMH). Northwestern also has an Intestinal Transplant program, which is directed by Dr. Jonathan Fryer, and achieved Medicare Certification in 2006. Together the NMH and CMH programs follow more than 200 intestinal failure patients.

            Northwestern’s Intestinal Failure management optimizes existing clinical strategies, while developing new approaches through clinical and basic science research. Their multidisciplinary, integrated approach combines medical (including hormonal therapy), surgical (including gut-lengthening procedures) and nutritional strategies to reduce or eliminate PN dependency.

            Northwestern has also strived to better define the role and timing of intestinal transplantation in intestinal failure management. High risk patients who remain PN dependent are monitored closely so that intestinal transplantation can be performed before the situation becomes irretrievable due to severe parenteral nutrition associated liver disease or other life-threatening PN-associated complications.

            Northwestern’s clinicians are international leaders in the refinement of techniques for dietary, medical, and surgical management of patients with intestinal failure, have lectured worldwide and have published their discoveries and recommendations in the leading scientific journals. Visit www.gutfailure.com and www.ibdcenter.org for more information.

University of California, Los Angeles Medical Center

            The Home Parenteral Nutrition (HPN) program at the UCLA Medical Center was founded in 1974 by Dr. Marvin Ament. The program was the first of its kind in California and serves both pediatric and adult patients. Consumers are seen in a designated PN clinic, where besides receiving care from an expert multidisciplinary team of physicians, RN specialists, a social worker, dietitian and pharmacist, there are opportunities for meeting other HPN consumers.

            The team at UCLA cares on average for 70 to 75 HPN consumers, as well as individuals who are supported on enteral nutrition or who have successfully been weaned from PN. The team has a strong commitment to consumer and caregiver education, advocacy and support. Quality of life issues for consumers and caregivers are a strong team focus.

            The UCLA Medical Center provides a full range of experienced medical and surgical specialists to support the special needs of the HPN population. The UCLA Homecare Pharmacy was one of the first homecare pharmacies in Southern California and continues as an experienced provider of HPN and other home infusion therapies.

            In 1991, the UCLA Intestinal Transplant program was founded under the direction of Dr. Douglas Farmer, completing the full scope of services available to individuals with intestinal failure. For more information regarding the HPN program at UCLA contact Laurie Reyen, RN, MN (310) 825-4823 or nsler@mednet.ucla.edu.

University of Pittsburgh Intestinal Rehabilitation and Transplantation Center

            The Intestinal Rehabilitation and Transplantation Center at the University of Pittsburgh’s Thomas E. Starzl Transplantation Institute provides care for adults and children with intestinal failure. The program was established by Kareem M. Abu-Elmagd, MD, PhD, FACS, in 1990, and provides enteral and parenteral nutrition, intestinal rehabilitation, and when needed, intestinal and multivisceral transplantation. The program offers a full multidisciplinary team approach for both the pediatric and adult components; the team may include transplant surgeons, gastroenterologists, clinical fellows, nutritionists, pharmacists, physician assistants, nurse coordinators, case managers, social workers, research coordinators, and other support staff. These professionals have extensive experience in managing clients who are unable to maintain their nutritional status through an oral diet as a result of severe malabsorption or intestinal obstruction. The pediatric crew, under the leadership of George Mazariegos, MD, is expanding its experience to include neonates and premature babies with congenital and acquired intestinal failure who need prompt comprehensive medical and surgical therapy.

            The team approaches every individual case with the hope to discontinue parenteral nutrition and resume full enteric support. Some patients may be candidates for intestinal rehabilitation without the need for transplantation. Different regimens, including diet modification, medical supplements, growth factors, and reconstructive surgery, may be used in an attempt to maximize nutrient absorption and minimize or eliminate the need for parenteral nutrition. When intestinal rehabilitation is not an option or the patient fails to respond to these therapeutic attempts, intestinal and multivisceral transplantation is offered. The center has the largest series of intestinal and multivisceral transplants in the world with the longest survivors. For more information about our programs visit www.transplant.upmc.com or call toll-free 877-640-6747.

University of Nebraska Medical Center

     The Intestinal Rehabilitation Program at the University of Nebraska Medical Center became formally organized and incorporated the former Nutrition Restart Center (Boston) protocols and patient follow-up in 2000. Prior to that, the surgeons, gastroenterologists, nurses, and dieticians in the program had worked together informally on the care of patients with short bowel syndrome (SBS) and intestinal disorders. Program staff include Dr. Debra Sudan, Dr. Jon Thompson, and Dr. Richard Gilroy, who are international leaders in the treatment of patients with intestinal failure.

     The primary focus of the program is weaning patients from TPN. Through in-patient and outpatient programs, the team teaches dietary modifications and monitors patients to safely wean them. For patients who are not candidates for weaning, they provide ongoing medical support and management. Patients can also participate in research.

     The center has extensive experience in surgical therapy for patients with SBS. More than 60 percent of patients who have undergone surgical intestinal lengthening procedures have been able to discontinue TPN. It is now twenty-four years since their longest survivor underwent such a procedure.

     Through these close associations, the program can be aggressive in medical and surgical interventions, resulting in the reversal of liver disease and clearing of jaundice in patients who would otherwise have required transplantation. However, the university has one of the oldest and most experienced intestinal transplant programs as well. High-risk patients are closely monitored during their weaning process; if the complications are not reversing, they may be placed on a waiting list and undergo intestinal transplantation when appropriate.

     The program includes both adult and pediatric facets, with dedicated dieticians and nurse coordinators. The program can be reached by calling (800) 548-3701 or by visiting their Web site, www.nebraskamed.com/services/intestinal.

Cincinnati Children’s Hospital Medical Center
Nutrition and Intestinal Care Center

The Nutrition and Intestinal Care Center at Cincinnati Children’s Hospital Medical Center is a comprehensive center for the management of patients with complex intestinal and liver disease. It combines long-standing expertise in nutritional guidance, medical and surgical intervention, liver transplantation, and recent advances in intestinal transplantation to optimize the care of children with intestinal failure.

The center is led by pediatric gastroenterologist Samuel Kocoshis, MD, and surgeons Maria Alonso, MD, and Frederick Ryckman, MD. Patients are thoughtfully evaluated to ascertain whether intestinal rehabilitation via nutritional and/or pharmacologic methods or non-transplant bowel rehabilitative surgery is feasible, or if the patient will require intestinal transplant. More than 300 liver transplants have been performed at Cincinnati Children’s since 1986, and in 2003, the center performed its first combined liver and intestinal transplant. The center’s small bowel transplant program is the first program in the nine-state Midwest region designated by the United Network for Organ Sharing (UNOS).

The center offers a range of multidisciplinary services, from evaluation and diagnosis to nutritional, medical, and/or surgical care to patient/family education and support groups. The center’s team includes pediatric and transplant surgeons, pediatric gastroenterologists, gastroenterology nurse coordinators, dietitians, social workers, and pastors. Staff home care personnel can tap into local resources in the patient’s area and ensure coordinated care when the patient returns home.

Cincinnati Children’s is also committed to making a safe and effective transfer of research from the laboratory to patient care, and researchers at the center are actively involved in several ongoing research projects. More information is available at www.cincinnatichildrens.org/intestine.