Kidney waitlists often miss target

Kidney waitlists often miss target

By Andrew Conte and Luis Fabregas

Three out of five dialysis clinics failed to meet a federal goal of having at least a quarter of their patients listed for a kidney transplant, according to data the Tribune-Review obtained.

At some clinics, transplant lists were non-existent: 103 clinics did not have a single patient on a waiting list, and 221 clinics listed just one patient.

"Essentially, every patient needs to be evaluated for transplant," said Dr. Herwig-Ulf Meier-Kriesche, medical director of renal transplant at the University of Florida. "There's a huge population of patients who should have been waitlisted, but never were."

The Trib analyzed clinic-specific figures from the Renal Data System from 2007, the most recent year available. The newspaper reported in September that the failure of doctors to inform patients about kidney transplantation shortens lives and costs taxpayers millions of dollars a year.

The clinic data show:

• Although 16 percent of dialysis patients nationwide were listed for kidney transplants, 1,702 clinics of the 4,870 clinics with at least 10 patients younger than 70 had a lower percentage of patients on waiting lists.

The Centers for Disease Control's Healthy People 2010 goal called for having 25 percent of all dialysis patients younger than 70 on waiting lists by 2010.

• Many of the more than 98,000 patients who started dialysis in 2007 did not hear detailed information about transplantation right away.

Doctors at fewer than a quarter of the country's dialysis clinics reported informing every patient about kidney transplantation: Only 805 of about 5,000 clinics said they informed all patients, and 45 said they did not inform any.

The Trib's findings occur at a time when chronic kidney disease has spiraled into an epidemic afflicting more than 26 million Americans. The illness can worsen to the point where kidneys shut down, requiring some form of dialysis or transplantation.

Doctors agree transplantation is the better option because it can cost less and extend a patient's life, while freeing patients from dialysis treatments of typically three hours at a time, three days a week.

"Transplantation is a win-win-win situation," said Amy Waterman, a researcher at Washington University in St. Louis. "A patient is healthier, their family gets a healthier, happier person to be around in their life for longer, and ... it saves the government money."

Finding out about transplantation early allows patients to seek a kidney donated by a relative or friend. Or, if they cannot find a living donor, it allows them to get in line for a kidney from a deceased donor as soon as possible. More than 88,000 people are waiting for kidney transplants.

Starting in October 2008, Medicare required clinics to inform every patient about transplantation and other treatment options. State agencies check clinics for compliance.

Clinics are required to fill out Medicare's Form-2728 when a person starts dialysis or undergoes kidney transplantation. The form asks whether a patient was informed of the kidney transplant option, and if not, why.

Workers at some clinics said they don't always educate patients about transplantation immediately and instead wait to tell them about the option in detail after their conditions stabilize. That might be after they fill out the Medicare form.

The reporting is reliable at the moment a clinic official fills out the paperwork, said Zarita Pearson, a registered nurse who owns five dialysis clinics in suburban Washington.

One of her clinics in Easton, Md., did not list anyone for a transplant in 2007 and reported informing four of 14 new patients about the option that year. The clinic is based in a nursing home, and many of the patients are too old or too sick to receive a kidney -- but everyone hears about the option eventually, she said.

"To have a discussion like that, you need to have a person whose head is clear, who's relatively calm and who's ready to hear the information you're about to give," Pearson said.

Officials at Altoona Regional Health System in Blair County said they may wait up to four weeks after a patient starts dialysis to discuss transplantation in detail.

One of the health system's two clinics reported that two of 53 new patients in 2007 were informed about transplantation; the other clinic had fewer than 10 new patients and was not included in the Trib's data. One clinic had 13.6 percent of patients younger than 70 on a kidney transplant waiting list, and the other had 9.8 percent.

Although transplantation is listed as an option on consent forms all patients sign before treatment, clinic workers have been checking "no" on the Medicare form's section that asks if the patient was informed. That's because patients are quickly given those options without much detail, said Michele Lacovitch, clinical manager.

"They are told, but in good faith, they are not really educated then at that point, because they are overwhelmed," Lacovitch said.

Dr. Marcos Manon, medical director at the Altoona clinic, said he was unaware Form-2728 asks whether the patient was informed about transplantation. The clinic will change the way it reports information to Medicare, he said.

"It would be unconscionable for me not to tell (patients) of all the options available," Manon said. "The problem is, (the transplant education) escapes this form because this is prepared with urgency."

Data for the nation's two largest dialysis providers -- Fresenius Medical Care and DaVita -- show a wide disparity among their thousands of clinics in the percentage of patients listed for transplants and in reporting whether doctors inform patients about transplantation.

Officials with the chains said they have blanket policies to inform every patient about transplantation.

"Nephrologists all believe transplantation is actually the best option for dialysis patients when medically appropriate," said Dr. Mahesh Krishnan, DaVita's vice president of clinical research. "If you have end-stage renal disease, you want a transplant. Kidneys work 24 hours a day, 365 days a year. The transplant is the only option that does this. For many patients, transplantation is the much, much better option."

The Kidney Care Quality Alliance, a Washington trade group that includes Fresenius and DaVita, said it is working on a survey that will show 92.3 percent of dialysis patients received information about transplantation and other options within the past year.

At DaVita clinics, workers fill out the Medicare form "very early on when patients begin dialysis," said spokesman Craig Handzlik.

The company's policy is to provide education within 90 days of a patient starting dialysis, at the six-month mark, on the patient's one-year anniversary and every year thereafter unless the patient requires more frequent education, Handzlik said. A handbook provided to patients advises that kidney transplantation offers the "best option" for kidney failure because of the quality of life it can provide.

"Our policy -- and also federal mandates for conditions of coverage -- dictates that DaVita outlines all patient treatment options to satisfy minimum education requirements," Handzlik said. "DaVita goes above and beyond federal requirements to ensure that patients are matched with the appropriate treatment option."

Fresenius spokeswoman Terry Morris described a similar education process for patients.

"If anyone indicates they are interested in transplantation or we feel they would be a good candidate for it, we're going to refer them to the transplant center," she said.

Officials at Liberty Dialysis-Friendship Ridge, a small, independent clinic with six stations in Beaver, reported that all patients were informed about transplantation -- even though all of its patients are elderly, nursing home residents.

"It's part of the admission process," said Jo-Ann Smilek, the nurse manager there and at another Liberty Clinic in Chippewa, where all patients are informed. "That's just the standard."

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