Survival and Complications Vary Widely At Kidney Transplant Centers

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Patients looking for the best kidney transplant centers, now have an objective and scientifically valid resource to go to. Konnectology, a web-based service that evaluates success at all 246 U.S. kidney transplant centers, gives patients easy to understand information on the top 20 kidney transplant centers.

For the first time, kidney patients can find the best kidney transplant centers based on survival rates, kidney rejections and complications after transplantation, thanks to Konnectology, a web-based service that evaluates success at all 246 U.S. kidney transplant centers.

Using a highly accurate scientific method for comparing publicly reported data from the transplant centers and Medicare, which is published in the Clinical Journal of the American Society of Nephrology (online and the December, 2011 issue), Konnectology has found wide variations in patient outcomes among transplant centers. While the average survival rate for three years after transplant is a high 90%, survival varies widely depending on the center. The new method reveals that the risk of death is three times higher at the worst center compared to the best.

Developed with funding from the National Institutes of Health, Konnectology’s new method for evaluating transplant centers uses mixed-effect models, a more accurate statistical methodology than the current observed-to-expected approach for measuring how patient outcomes vary across transplant centers. Stefanos Zenios, a Stanford professor and a noted expert on mathematical modeling in kidney transplantation, took a leave of absence from Stanford to develop it. Based on this method for assessing patient outcomes, experience and wait times, Konnectology publishes the top 20 kidney transplant centers. The list is publicly available until December 13.

Life-and-Death Decisions for Patients and Doctors
“This top transplant center list reflects Konnectology’s social mission to provide patients the knowledge and resources they need to get a successful kidney transplant,” says Constantia Petrou, Ph.D., Konnectology chief executive who is a Harvard-trained scientist in public health and co-founded the company with Zenios. “Until now, information on kidney transplant centers has been an inaccurate, subjective, out of context and nearly impenetrable data dump,” she says. “Konnectology is giving patients and doctors scientifically valid, objective information on patient outcomes, experience and wait times in an easy-to-understand and easy-to-use format for evaluating transplant center options: one of the most important steps to a successful kidney transplant.”

Overall, Konnectology found that survival rates at the centers range from a high of 94% to a low of 83%, based on data from 1995 to 2009, the latest year available. Transplants that fail within three years vary from a low of 11% at the best center to a high of one out of four at the worst. Greatly impacting quality of life, complications that put patients back in the hospital within a year of the transplant show the biggest gap, with patients at the top centers developing complications 26% of the time compared to 59% of the time at the worst.

“Kidney patients and their doctors need easy-to-understand, personalized, actionable information about kidney transplant centers so they can make the best decision on where to seek treatment,” says Karen E. Ryals, executive director of the American Association of Kidney Patients (AAKP). “They also need help navigating the labyrinthine process to get on the kidney transplant list, with only 1 out of 3 qualified patients making it that far. Konnectology can help increase the number of patients that make it onto the transplant list as well as make treatment decisions that are likely to be more successful.”

To help more patients navigate the transplant list process, Konnectology has developed a step-by-step online kidney transplant guide. Patients and their families can access a wealth of information and tools, including a sophisticated yet easy-to-use tool for comparing transplant centers’ success based not on averages but on their specific situation, including age and donor type. Because about half of patients who start the transplant process drop off during evaluation, Konnectology offers detailed checklists on how to prepare for evaluation and how to complete evaluation tests, which patients can customize based on their center’s instructions. To potentially reduce their wait, patients also can find information on the centers with the shortest wait and how to get on the wait list at more than one center.

Spurring improved center performance
“With their focus on treatment, primary care physicians and nephrologists simply do not have the time or specialized skills to uncover, analyze and compare data about transplant centers,” says Nasrollah Ghahramani, MD, assistant professor, Pennsylvania State University College of Medicine, Division of Nephrology. “Konnectology fills a critical void by providing objective information to patients and their doctors as they make important choices on where to go for treatment. Equally important, it can help fulfill the goal for public reporting of healthcare data by encouraging the below-average and average centers to improve performance, leading to better results for more patients.”

Performance differences between the best- and worst-performing kidney transplant centers did not change after public reporting of key data began in 2001, according to the Zenios et al study in the CJASN. “As we report in the Clinical Journal of the American Society of Nephrology, 33% of all deaths and 29% of all graft failures within three years of transplant are due to performance differences among centers,” notes Zenios.

“We want to see those performance differences narrow, with all centers enhancing patient outcomes, by making expert-level and scientific-quality information accessible,” Petrou explains. “We believe that it is patients with their doctors and their choices where to go for treatment that will ultimately be the incentive for centers to improve their results.”

About Konnectology
Konnectology is a suite of interactive patient guides for patients and families developed by
Culmini Inc., based in Burlingame, CA. The Konnectology web-based services offer tools for navigating complex and life-changing medical treatments. Culmini’s first online Konnectology guide walks kidney patients through a step-by-step process to get on the kidney transplant list and choose the best transplant centers for their specific situation. Culmini also produces the Top 20 U.S. Kidney Transplant Centers list and it can be found on the Konnectology site.


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