Thursday, March 29, 2012

The AJT Report News and issues that affect organ and tissue transplantation

The AJT Report News and issues that affect organ and tissue transplantation

Article first published online: 28 MAR 2012
DOI: 10.1111/j.1600-6143.2012.04057.x
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American Journal of Transplantation
Volume 12, Issue 4, pages 799–800, April 2012

© Copyright 2012 The American Society of Transplantation and the American Society of Transplant Surgeons

A Maze of Information
When patients have a choice of transplant centers, how do they make a decision?

Choosing a transplant center can be a confusing and frustrating process for some people. At the initial news that a transplant is needed, an emotional patient may be tongue-tied and not know what questions to ask the doctor. When the shock subsides, the patient may seek more information but not know where to look, or may not understand the plethora of material available online.
When individuals have a choice of transplant centers, how do they make that decision? There are no specifi c regulations about the information used to rate center performance. Additionally, the growing numbers of websites vary greatly with regard to the specifi c information that is processed and interpreted.
“There is a general concern about nonmedical websites inappropriately influencing what is arguably the most important medical decision of someone's life,” says Allan Kirk, MD, PhD, professor and scientific director at Atlanta's Emory Transplant Center, and editor-in-chief of the American Journal of Transplantation. “The best site depends on a lot of things that are very difficult to generalize into a rank list. Still, physicians need to make sure they are providing understandable information. Because if they don’t, someone else will.”

Where It Begins

When the patient has the ability to choose his or her transplant center, that choice is tremendously important, says Jesse Schold, PhD, director of outcomes research and clinical epidemiology at the Cleveland Clinic. “There is signifi cant research to suggest that a patient's prognosis is directly related to the center where they are fi rst treated. We showed a few years ago that there is almost a 50% difference in life expectancy for a kidney transplant candidate based on characteristics of the center to which they fi rst go.”1
Choice of a transplant center begins for the patient with transplant information and suggested transplant centers provided by the referring physician. That choice is usually based on geographical location, the referring physician and insurance coverage. Some patients, however, decide to conduct their own research online. Individuals interviewed for this report suggest that physicians and patients should take a careful look at the source of the information provided in these sites.

What's Out There

Many agencies and regulatory bodies provide metrics for quality of care providers. “It's diffi cult to navigate through all of them,” says Dr. Schold. “Often they don't agree on what the high-quality versus low-quality benchmarks are, and they use different metrics to rate hospitals.”

OPTN/UNOS: A comprehensive source of information is provided by the nonprofi t Organ Procurement and Transplantation Network/United Network for Organ Sharing (OPTN/UNOS) through their patient website Individuals can request free information packets and brochures, including a patient's guide to transplantation, an explanation of organ transplantation and criteria, a list of all U.S. transplant centers, a “snapshot” of the OPTN/UNOS waiting list and a closer look at how to obtain transplant center data.


• When a patient has the freedom to choose his or her transplant center, that choice is tremendously important.
• Patients have access to a great deal of physician and hospital rankings, many of which have vastly different metrics and benchmarks.
• Physicians should be aware of the variety of data available, and ensure they are providing patients with clear, complete information.

SRTR: Another source of data for transplant candidates is the Scientific Registry of Transplant Recipients (SRTR) website, which offers an abundance of information, including comparative data on transplant centers. While these data are the most objective accountings for many relevant metrics, patients can feel intimidated by the site and often are not aware that the SRTR provides a phone advisor who can walk transplant candidates through the abundance of information.

KidneyLink: A relatively new guide for transplant candidates is, a free, nonprofit website written by physicians and developed with private donations to the Poly-cystic Kidney Disease Foundation. The site provides a list of questions patients can ask their doctors, a description of tests to expect, tips for how to get on single and multiple waiting lists and more. The information provided for each center (wait-list times, number of patients on the wait list, living- and deceased-donor volume, patient survival rates, etc.) is updated yearly with data from SRTR.

Konnectology: Constantia Petrou, PhD, MBA, founder and CEO of the new, for-profi t service, says she's found that patients often don't have much time with their doctor, so they go off on their own to research the doctor's recommendations. “That is the point where they get lost,” she says. “They either can't fi nd enough specifi c information to answer their questions, or they fi nd a lot of misinformation out there.”
Launched in December 2011, Konnectology was developed with funding from the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDKD). For a fee, Konnectology provides transplant candidates with a list of “best” transplant centers based on the company's methodology, which is described in a study published in the Clinical Journal of the American Society of Nephrology.2 Additionally, the site offers guidelines on how to prepare for evaluation, complete tests, ask specifi c questions of the doctor and transplant staff, and get on a single transplant list or multiple waiting lists.

HealthGrades: HealthGrades is a for-profit (but free to users) source that patients can use to select physicians and hospitals. In November 2011, HealthGrades published a list of transplant hospitals “with the best track record for survival and chances of receiving a donor organ,” according to the company's news re-lease.3 The rankings are based on SRTR data and take into account patient and graft survival outcomes as well as wait-list mortality.

International Transplant Center Data Can Be Hard to Find

No one can argue against patients being informed about transplant center performance and statistics, says Francis Delmonico, MD, president-elect of The Transplantation Society and professor of surgery, Harvard Medical School and Massachusetts General Hospital.
An advisor to the World Health Organization (WHO), Dr. Delmonico says the transparent data available to patients in the U.S. aren't duplicated elsewhere in the world. “For example, the number of living and deceased kidney transplants per million population and by countries is known, but center outcomes are not, ” he says, noting that The Transplantation Society is working with WHO to achieve better transparency about transplant center data worldwide, “but it's a tall order.”

Best Practices

Meanwhile, there are those who wonder if it's at all possible to grade transplant centers, taking into account all the variables. Whatever the case, Dr. Schold believes the transplant community can do a better job in providing tools to help patients navigate the challenging road ahead. Says Amy Hackney, president of the Transplant Financial Coordinators Association, “It is a team effort to present patients with the information to make an informed decision.”


Oh, Canada

According to the recent Canadian Institute for Health Information (CIHI) Canadian Organ Replacement Register (CORR) annual report on end-stage organ failure, organ donation rates have stagnated in Canada since 2006.1 Released in February 2012, the report looks at donations between 2001 and 2010 (the most recent year for which data are available).
The living donor rate in 2010 was 16.3 per million population, compared with 17.0 in 2006. The deceased donor rate in 2010 was 13.6 per million population, compared with 14.0 in 2006. All rates were higher than 2001 donations, though.
“We’ve had problems in Canada for some time,” says Philip Halloran, MD, PhD, director of the Alberta Transplant Applied Genomics Centre and founding editor of the American Journal of Transplantation. He blames several groups for failing to advocate for those who need transplants: professionals (including himself), individuals, societies such as the Canadian Society for Transplantation, provincial governments and particularly the federal government— all of whom refuse to face their organ transplantation responsibilities, says Dr. Halloran. “Since we share the same continent with the U.S., there is no good reason for this except the inefficiency of our organizations.”
“In 2008, we were advocating for the Canadian Senate to put in place a Canadian interpretation, under the Canadian constitution, of what the Americans have shown works,” he says. However, that initiative died when the provincial governments chose, instead, for Canadian Blood Services to oversee organ donation.2
Dr. Halloran suggests that Canada needs a national organ transplant act and a national organ transplant agency such as the Organ Procurement and Transplantation Network/United Network for Organ Sharing and the Scientific Registry of Transplant Recipients. “If we could achieve what the Americans are achieving, we could save many lives every year,” he says.

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