The D&T Report

Getting Educated

A recent study shows that kidney patients are still not well-informed about peritoneal dialysis as a treatment option. How this can affect outcomes, and what to do about it

In this special issue of D&T, Ramesh Saxena, MD, PhD, points out that the number of U.S. patients who opt for peritoneal dialysis (PD) is on the decline, despite a rise in the incidence of end-stage renal disease (ESRD) and in the use of other renal replacement therapies (RRTs).1 This is surprising, given that PD is often associated with many benefits over other forms of dialysis, including better clinical outcomes, greater scheduling flexibility, and a lower risk of bloodborne infections.

There are many reasons for this state of affairs, but Dr. Saxena places inadequate pre-ESRD education near the top of the list. In another article in this issue, Beth Piraino, MD, writes that improved patient training could help lower the risk of PD-associated peritonitis.2 These observations underscore a larger problem: By and large, patients still are not wellinformed about their treatment choices and how best to prepare for the inevitability of RRT. A recent study confirms this impression.

Lead author Stephen Z. Fadem,MD, clinical professor of medicine at Baylor College of Medicine in Houston, Texas, and colleagues sent emails to 9,000 people whose names appeared in the database of the American Association of Kidney Patients (AAKP). “Ourmain study objective was to better understand patient satisfaction with the scope and quality of dialysis education received before beginningRRT, as well as with their current therapy,” the authors write.3 The 46-question survey covered multiple issues, including satisfaction with current treatment and education before starting therapy, rated on a scale of 1 (extremely dissatisfied) to 7 (extremely satisfied).

Responses were received from 977 people, all of whom had ESRD. Of those patients, about 70% received education about in-center hemodialysis (ICHD) before choosing a therapy, compared with 58% who were told about PD and only 32% who learned about home hemodialysis (HHD). Interestingly, 87% of patients currently undergoing PD reported learning about it prior to choosing treatment, suggesting that most of the people who were educated about this modality selected it.

The mean score for treatment satisfaction for the group as a whole was 5.4 on the 1- to -7 scale. The mean scores for PD and HHD were 5.2 and 5.5, respectively, both significantly higher than the mean of 4.5 reported by people receiving ICHD (p < 0.05). Patients on all three dialysis modalities rated their satisfaction with pre-treatment ICHD education at 4.8; patients currently on PD rated their satisfaction with pre-treatment PD education at 5.8, making them the patientsmost satisfied with the information they received prior to treatment. HHD patients gave their pre-treatment education a score of 5.5. The authors concluded that the respondents' satisfaction with their dialysis education was “moderate, leaving room for improvement.”

To assume that patients on ICHD were dissatisfied would be “the wrong spin,” Dr. Fadem tells D&T. “It's that patients were more satisfied with home and peritoneal dialysis than they were with in-center hemodialysis.” Although the patients expressed a relatively high degree of satisfaction with the education they received for PD andHHD, Dr. Fadem believes training for thosemodalities actually is not as good as it is for ICHD. “I think patients basically are not aswell-informed about other modalities as they are about staff-assisted in-center hemodialysis.”

If anything, these findings show what happens when the vagaries of the American healthcare system collide with the realities of human nature. “Each year, somewhere between 40% and 50% of folks who start dialysis are what we would term ‘emergent starts,”’ says Dori Schatell, MS, executive director of the Medical Education Institute in Madison, Wis. “These patients may have less than three months' notice that they need dialysis. They are in crisis; they are terrified; they are often pretty uremic; and they don't necessarily know anything whatsoever about dialysis.” But, Schatell adds, “that does not let the clinics off the hook for educating the patients once they are on dialysis.”

The clinics are not the only culprits here. The Medicare Improvements for Patients Providers Act (MIPPA) allows reimbursement for kidney disease education by eligible providers, but although the act was passed in 2008, reimbursement did not begin until January 2010, so it is still too early to assess its impact.

Clinicians themselves also bear some responsibility. Primary care physicians (PCPs) and nephrologists must develop good working relationships so the PCP feels comfortable referring the patient to the nephrologist as their kidney disease progresses, says Dr. Fadem. “The nephrologist can work with the primary physician, the patient, and the patient's family to decide on future therapy. If we can start early enough in the course of that patient's care, then the patient is psychologically prepared, and they have better outcomes,” he says. “In other words, some of the measures we use are better when the patient starts dialysis, they ultimately do better on dialysis, and their healthcare costs will be very inexpensive, relative to the transition costs that we're having to pay now.”

At least one other study expert agrees. “Getting an early referral to a nephrologist, so they can intervene in a pre-emptive time frame, absolutely would make a difference,” saysAmy Friedman,MD, director of the transplant program and professor of surgery at State University of NewYork Upstate Medical University, Syracuse, and a coauthor of theAAKPsurvey. “That would give the nephrologists enough time to introduce all these concepts and let the patients think in advance about the different modalities,” she says.

Recognizing that fear and denial often drive a patient's failure to prepare for going on dialysis, the Medical Education Institute (MEI) has created a slide series for people with CKD Stage 3 through ESRD. The goal is to help patients slow the progression of their CKD and, when that is no longer possible, to choose the treatment that best suits their circumstances. First and foremost comes the instillation of hope. “Patients who believe their lives are over won't hear anything else you say,” says Dori Schatell, MS, executive director of MEI. “Once patients believe a good life is possible, they can move past denial and learn what they need to do to self-manage effectively.” Hence the title of the series: How to Have a Good Future with Kidney Disease.

The slides explain what kidney disease is, how patients can come to terms with it and slow its progression, what their treatment options are, and even how they can address financial issues and plan for the future. No special training is required for their use. The slides are available at www.lifeoptions.org/goodfuture.

At the center of all of this, of course, sits the patient. Plenty of people with ESRD take full responsibility for their condition: they watch their diet, take their medication, see their doctors faithfully, and regularly surf the Internet for reputable sources of information. They are prepared for the day when their kidneys will need outside help. Unfortunately, many patients are not so proactive. “Many people who start dialysis emergently have been in denial,” says Dori Schatell. “Maybe they had diabetes for years, and their doctors were telling them their kidneys are failing, but they didn't think that could be happening because they felt fine.” One way to counter that denial is to address patients' fears and offer hope, she says. “The message needs to be, ‘Here's how you can have a good life even if your kidneys fail.”’

Patient education is a multifaceted challenge and, as such, requires a nuanced approach. This can include efforts to overcome patients' natural fears and denial, as well as transmission of factual information by clinicians and dialysis providers. The effect of the educational efforts required by MIPPA should be followed closely so educators can determine what works—and what doesn't.

A new book takes an in-depth look at the global market for illegal organ trade, and raises troubling questions about our own legal system of organ procurement

Scott Carney figures he's worth about $250,000. That's not the balance of his bank accounts; it's the price he places on the various parts of his body—his blood, bones, skin, organs, and even his hair. In his fascinating new book, The Red Market, Carney describes the global demand for human flesh and the gruesome lengths to which unscrupulous people will go to profit from that demand.1 That includes the purchase of kidneys from destitute people in places such as India, Pakistan, Egypt, and South Africa to fulfill a “neocannibalistic” search for transplantable organs. He also questions the assumption that anyone who needs a kidney should be entitled to get one.

Carney, an investigative journalist and contributing editor at Wired magazine, argues that the legitimate organ-harvesting and transplantation systems in place in wealthy countries like the United States help drive the shadowy doings of thirdworld organ procurers. “It's all part of the same overall system: The legal market helps fuel the illegal market, because the economics of the legal market make illegal kidneys valuable as well,” he tells D&T. To him, the American who gets a kidney from an altruistic donor at a topflight medical center in the U.S. and a wealthy Filipino who buys one from a shady broker in Manila occupy different points on the same continuum, and are all part of what he calls the “red market.”

Ethical conventions calling for donor anonymity have produced a lack of transparency that would be unacceptable in many other situations, says Carney. “We wouldn't let an oil company not disclose where they get their oil from, or what their environmental policies are, but a lot of times in these organ networks there's no public transparency on the supply side.” Proponents of anonymity may believe it protects donor privacy and preserves the altruistic nature of the transaction, but Carney claims it also allows a corrupt organ trade to flourish with relative impunity in less highly regulated countries.

Knowing something about the original owner of a kidney might also remind the recipient that the donor is (or was), a sentient human being who has sacrificed a piece of themselves to save the patient's life. “When you're diagnosed with kidney failure, I don't think you should say, ‘I need a kidney,”’ he explains. “You should say, 'I need someone else's kidney. 'That's really at the heart of this:We need to feel that we're indebted to another actual human being. And if we can rehumanize the process, maybe we can proceed further along this path.”

Carney's book raises some troubling questions aboutwhat, if any, limits should be placed on the quest for body parts to meet the ever-growing demand created by steady improvements in medical care and surgical techniques. “Just because you need an organ doesn't give you the right to get it,” he warns. “At what point does a healthy person have to give a kidney to a sick person? There's no real philosophical reason why you have to do that.”

CMS Declines Payment Changes for ESAs —By Ralph Levy, Jr.

ON JUNE 16, THE CENTERS FOR MEDICARE AND MEDICAID Services (CMS) announced its final decision not to issue a national coverage determination (NCD) for erythropoiesis stimulating agents (ESAs). This means that, subject to adherence to the previously promulgated anemia management guidelines, CMS will continuing paying dialysis providers that administer ESAs under the reimbursement methodologies that currently apply to payments for dialysis services.

In a lengthy document that gave an extensive history on the use of ESAs and supporting studies as to their effects, CMS indicated that its conclusion not to issue an NCD was prompted by its inability to cite studies that could “delineate the risk-benefit for the various patient populations, particularly the Medicare population.” CMS indicated that although clinical studies indicated that ESAs were successful in increasing hemoglobin, it could not conclude that ESAs increased the health-related quality of life or survival of patients with chronic kidney disease.

It is a matter of conjecture as to whether this decision by CMS was motivated by the global bundling system that will become effective in January. The new methodology under bundling should reduce CMS's previously expressed concerns as to the “overdosing” of ESAs to enhance reimbursement under the composite rate billing system that is now being phased out.