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Choosing a transplant program: The information you need to make the decisionIf your physician told you that you needed a new kidney, liver or other organ, how would decide where to have the transplant performed? Many people simply go to the hospital recommended by their doctor or to the one closest to home. But making a significant health decision like this one should involve in-depth research and the collection of objective information. “PinnacleCare Members have an extremely valuable resource that can help them make any type of health decision, including finding a transplant program,” says Dr. Miles J. Varn, Chief Medical Officer, PinnacleCare. “We have assisted several Members with the process of choosing a Center of Excellence for transplant surgery and are well versed in the complexities and nuances of that process.” “When most people are told they need a transplant, they go to the online search engine Google and look at what’s available in their region,” says Achilles Demetriou, MD, PhD, Chief Operating Officer and Executive Vice President of University Hospitals, Vice Dean for Clinical Affairs at the Case Western Reserve University School of Medicine and former Department of Surgery Chair at Cedars-Sinai. “What they find is a list of local transplant centers marketing their programs. What they need is objective, data-supported information about how programs measure up.” Dr. Demetriou, a member of PinnacleCare’s Medical Advisory Board, says that the best resource for people exploring transplant programs is the web site of the United Network for Organ Sharing (UNOS). UNOS is the non-profit organization that operates the nation’s Organ Procurement and Transplantation Network (OPTN) on behalf of the U.S. Department of Health and Human Services. The organization is responsible for ensuring equitable access to available organs, maintaining the national patient waiting list and organ allocation system and coordinating the matching of organs with potential recipients. UNOS also collects and analyzes national transplantation data and educates physicians and the public about the transplant process. “On the UNOS site, you will find data for every transplant program in the U.S., including survival rates, median waiting times, current waiting list numbers and more. The information is managed by organ or disease so you can research your specific situation. There are also valuable educational resources there about the transplant process, life after transplantation, support groups and news on the latest research and drugs,” notes Dr. Demetriou. Answers you need before choosing a transplant program There are more than 250 accredited transplant programs in the U.S. When seeking the most appropriate center for your transplant, there are several questions you should ask. • Number of transplants performed: How many transplants of the specific organ you need does the center perform each year? A larger volume of transplants means that the transplant team has more experience with the procedures. • Post-transplant survival statistics: What are the short- and long-term survival rates for transplant patients? Experts suggest not only looking at the center’s survival rates, but also comparing actual rates with expected rates which are based on U.S. patient mortality rates analytically adjusted for recipient health and other factors that can affect the transplant outcome. It’s also important to review data about how long the transplanted organ survives in its new host. • Wait list times: How long is the average patient on the waiting list before receiving his or her transplant? Even if a center’s post-operative survival data is good, you need to know how long the wait until transplant is, because, especially for seriously ill patients, the sooner the transplant can be performed, the better. If your condition worsens while you’re waiting, you may not qualify for transplantation when an organ becomes available. Comparing the center’s wait times to national data may help you decide to choose a center in another region. • Number of transplant centers served by an organ procurement network: How many organs are available in the area versus how many transplant candidates are on the waiting list? In essence, this question evaluates the competition for organs, comparing the population served with the potential and historical availability of organs. • Center and physician accreditation: Is the center accredited by the Joint Commission on Accreditation of Healthcare Organizations (JCAHO), an independent, not-for-profit organization that evaluates U.S. health care organizations? You should also ask if the surgeon and other physicians involved in the process are board certified. • Center infrastructure: How stable is the transplant team? Learn if any key members of the team have recently moved to another center, who has replaced them and what experience and expertise the new team members possess. • Post-transplant follow-up: Does the center offer the complete spectrum of post-transplant follow-up care and resources? Follow-up care is especially critical in the first year post-transplant, so the center should have an expert team and consistent follow-up process in place. If you receive your transplant at a center far from home, find out if the center can coordinate follow-up through medical providers with transplant care experience in your home community. You should also ask what support services are available to help you and family deal with post-transplant daily living. “I also encourage people to ask what electronic tools are in place to allow them to access their own lab and report data,” adds Dr. Demetriou. “The patient is the most motivated monitor of his or her condition. The more informed you are, the better your outcome.” How the transplant system works UNOS has a computerized network that links the 58 organ procurement organizations (OPOs) located in the U.S. and Puerto Rico and transplant centers. The OPOs collect organs from deceased donors. After a patient is evaluated and determined to be a transplant candidate, his or her information is added to the national waiting list. The list is not ranked, but is rather a pool of people in need of transplants. When an organ becomes available, all the patients in the waiting list pool are matched against the donor characteristics and then ranked based on a number of considerations which can include blood type, tissue match, the amount of time the person has been on the waiting list, immune status, distance between the potential recipient and the organ and medical urgency. The organ is offered to the transplant team of the person ranked first on that list. The team then assesses the current medical condition of the patient, the compatibility of the donor and recipient and other factors. If all those factors align, the transplant is performed. For certain types of transplants, the organ or tissue can come from a living donor. Living donors can provide a kidney, a segment of the liver, a lobe of the lung or a portion of the pancreas or intestine. Transplant centers handle the process of finding living donors, many of whom are members of the patients’ families. PinnacleCare relieves Members of the burden of information gathering “PinnacleCare Members’ personal Advocates and the members of our expert research team can gather a wide range of medically sound, objective information to help guide the decision-making process,” notes Dr. Varn. “They also have expedited access to the nation’s top transplantation specialists. In addition, the Advocate is a source of support for both Member and family, which allows our Members to focus on the process of healing.” Resources “Death by geography.” This L.A. Times article describes how where you live can impact how quickly you receive a needed transplant. |
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