Kidney Patients Ask for More Information on Options

Many kidney failure patients want more detailed information about their treatment choices, according to a new study.

More than 30 percent of the 1,000 U.S. patients who took part in an Internet survey said they felt that the different therapies -- in-center hemodialysis, peritoneal dialysis, home hemodialysis and kidney transplantation -- were not "equally or fairly presented to them."

Nearly 70 percent of the respondents told the researchers that they were not provided with specific education and training about home hemodialysis, a relatively new option that may offer some advantages -- including ease of treatment -- over in-center dialysis.

Overall, the participants were moderately to highly satisfied with their current treatment, but satisfaction was highest among transplant patients and home dialysis patients, and lowest among in-center dialysis patients.

Doctors had the most influence over people's choice of therapies, the survey found. And, what patients said they wanted most was more information on new treatment and improved medications.

The study was published online Feb. 17 in the Clinical Journal of the American Society of Nephrology.

"Dialysis patients should be provided with enough information to choose optimal therapies," Dr. Stephen Fadem, of Baylor College of Medicine in Houston, and lead author of the report, said in a news release from the American Society of Nephrology.  "Our survey shows that dialysis patients do not always receive uniform, thorough information about all possible treatment methods and, as a result, are only moderately satisfied with their pre-treatment education."

~BusinessWeek.com~

Dialysis Data, Once Confidential, Shines Light on Clinic Disparities

For years, the government has collected a rich store of data about the performance of individual dialysis facilities. But it has kept nearly all the information secret from those it might benefit most: Patients.

Now ProPublica has obtained this data under the Freedom of Information Act. We are making a comprehensive set of clinic records publicly available  for the first time on our website.

Patients and others can search for a clinic and see how it compares on 15 key measures, ranging from mortality and hospitalization to transplant rates and infection control. Also on the site are historical reports dating to 2002.

Release of the data is long overdue, patient advocates say.

"It gives you a snapshot of what a clinic is about," said Roberta Wager, a past president of the American Association of Kidney Patients who works as a nurse and patient educator at several dialysis clinics in Texas. "This is your life. Wouldn't you want to have everything in your favor?"

There are almost 400,000 Americans who depend on chronic dialysis to do what their failed kidneys cannot, a number that has grown swiftly over the past two decades, spurred by epidemics of obesity and diabetes.


More than 5,000 facilities have sprung up to provide them with care, stretching into the nation's most rural areas and competing for patients in urban and suburban areas.

Patients today have more choice than ever. Yet most pick centers based on convenience, or on what their doctors suggest, with little notion that even clinics within the same communities can have substantial disparities.


In more than 200 counties nationwide, the data show, the gap between facilities with the best and worst patient survival, adjusted for case-mix differences, is greater than 50 percent. In areas such as Allegheny County, Pa., or Franklin County, Ohio, each with upwards of two dozen clinics, the differences are even more substantial, exceeding 200 percent.

There is also wide variability in how often patients at different clinics are hospitalized for septicemia. Although septicemia cases can be unrelated to dialysis, it is a significant risk for patients, who typically have their blood cleaned of toxins three times a week. Nationally, the rate was about 12 percent a year for 2006 to 2008. But in dozens of counties, the spread between facilities with the highest and lowest rates was more than 25 percentage points.

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Dialysis: An Experiment In Universal Health Care

Every year, more than 100,000 Americans start dialysis treatment, a form of chronic care given to people with failing kidneys. And for many, the cost is completely free. Since 1972, when Congress granted comprehensive coverage under Medicare to any patient diagnosed with kidney failure, both dialysis and kidney transplants have been covered for all renal patients.

But a new joint investigation between The Atlantic and ProPublica found many problems with dialysis in the U.S.: The cost of treatment is among the world's highest, while the U.S. mortality rate for dialysis patients is one of the world's worst. One in four patients will die within 12 months of starting treatment.

Investigative reporter Robin Fields, who spent the past year reviewing thousands of documents and interviewing more than 100 patients, doctors, policymakers and experts, found systematic failures in the way dialysis centers are set up in the United States.

"At clinics from coast to coast, patients commonly receive treatment in settings that are unsanitary and prone to perilous lapses in care," she writes in a piece that will be published in the December issue of The Atlantic. "Regulators have few tools and little will to enforce quality standards. Industry consolidation has left patients with fewer choices of provider. [And] the government withholds critical data about clinics' performance from patients, the very people who need it most."

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