Diabetes, hypertension and obesity are the chronic illnesses that grab headlines and the attention of health care policymakers. Yet chronic kidney disease, most commonly the result of one or a combination of these three conditions, flies under the radar.
That’s despite 26 million Americans having chronic kidney disease, nearly comparable to the number who have diabetes. The condition is the ninth-leading cause of death in the U.S.
“Kidney disease is very much underrecognized in the general population,” says Gerald Hladik, M.D., chief of the University of North Carolina Division of Nephrology and Hypertension. “Everybody knows about cancer and heart disease, but not many people think about kidney disease. But it’s just as important, with a prevalence that’s often higher than many forms of cancer, and outcomes that are quite severe.”
Patients with kidney disease have much higher risks of hospitalization, readmission and death than their peers without the condition, and the risks are even worse for those with end-stage disease.
The burden the disease puts on the health system and patients and the general lack of awareness about the condition have spurred many hospitals to embark on screening and prevention, disease management, dialysis safety and readmission prevention programs.
Still, kidney damage can’t be undone. The goal is to slow progression. If the kidneys already have failed, the patient has end-stage renal disease, and the only options are dialysis or transplant.
Moreover, kidney disease is a silent condition. Patients typically are symptom-free until they have significant-to-severe kidney damage, says Brendan Bowman, M.D., University of Virginia Health System regional medical director for dialysis. “As soon as patients come in the door and I tell them they have kidney disease, the first thing I hear is, ‘My kidneys feel fine.’ I say, ‘They will right up until the end.’”
Dangers of delay
With kidney disease, each of its five stages brings greater severity, with the fifth stage being classified as end stage, when dialysis typically is introduced. Less than 10 percent of people with chronic kidney disease at Stages 1-3 were aware they had the disease before testing positive, according to the U.S. Renal Data System’s 2016 Annual Data Report. Even at Stage 4, less than half of patients knew they had the condition.
This makes patient education about the disease and its management vital, Bowman says. “It can be a struggle to get over the hump of ‘what does kidney disease really mean, how does it affect me, and why are my kidneys important?’” he says. “That’s where outreach and educational tools are helpful.”
Because kidney disease usually is caused by damage from hypertension, diabetes or both, treatment involves tight control of these conditions, as well as diet counseling. Nephrologists typically manage the disease and its causes with patients’ primary care doctors.
And, primary care physicians are doing a better job of contacting nephrologists when patients’ kidney function scores are declining, says Li-Li Hsiao, M.D., director of the Brigham and Women’s Hospital Asian Renal Clinic in Boston and assistant professor at Harvard Medical School. However, in general, the nephrology community needs to do more to educate primary care physicians about when to refer patients for specialty care, she adds. “By the time we see patients, very commonly they are either in Stage 3 or 4,” she notes.
Being unaware of their condition contributes to the fact that up to 38 percent of new dialysis patients have received little or no nephrology care, according to the U.S. Renal Data System report.
The lack of pre-dialysis nephrology care poses several patient risks. For example, patients who don't get care will not receive the surgery that creates an access point for dialysis — called a fistula — at the appropriate time. A fistula is not usable until about two or three months after the surgery, which ideally would take place when it becomes evident that the patient will need dialysis. Patients who must start dialysis before a fistula is usable start treatment with a central venous catheter, which is associated with higher rates of infection, cardiovascular events and even death, compared with patients who have fistulas or arteriovenous grafts, another means of dialysis access.
Because patients typically do not feel the symptoms of kidney disease, they frequently have psychological barriers to getting fistula surgery. “Many patients have difficulty accepting the diagnosis once they get close to dialysis and do not want to have surgery performed on their arm,” Hladik says. “Many genuinely have a fear of dialysis and have heard stories about patients feeling badly with dialysis,” he says. “We spend quite a lot of time as nephrologists talking to patients about the risk of starting dialysis with a catheter and the need to have this surgery performed pre-emptively.”
The U.S. Renal Data System report notes that 80 percent of hemodialysis patients started treatment with a catheter. At 90 days after initiation of dialysis, 68 percent of hemodialysis patients still were using a catheter. By the end of the first year, though, 80 percent of hemodialysis patients use either a fistula or a graft without a catheter.
To alleviate such patient anxiety, the UVA Health System Kidney Center Clinic launched an educational program for its kidney patients who likely will require dialysis. The program informs patients about fistula surgery and dialysis through Kidney Talk, a class that reviews treatment options, nutrition and financial planning.
Patients hear from nutritionists, nurses and, perhaps most importantly, people already on dialysis. “Their peers can answer quality-of-life questions and get into the nitty-gritty details of surviving with it day to day,” Bowman says. “We know that it is a massive transition and a huge burden on patients. There are very few of us doctors who have been on the other side of it.”
Patients who lack pre-dialysis nephrology care are more likely to be be sicker at the start of dialysis. “When people show up sick with kidney disease, they have multiple things going on at the same time — electrolyte disarray, their blood pressure is often wildly out of control, and they’re heavily fluid-overloaded,” Bowman says.
The first 90 days are the most dangerous period, he notes. New dialysis patients are at higher risk of death or hospitalization during that time.
Easing the path
To help avoid these negative outcomes, UVA in February created a transitional start unit. “It’s basically a soft landing,” Bowman says. For the first month of dialysis, patients meet with a clinician two or three times a week, instead of the typical once-a-week visit. They receive their dialysis in an outpatient center, but the center uses a home-dialysis machine, which is slower and gentler than the machines used in the center. Patients who experience fluid gain or other problems can have an extra dialysis session added to the traditional three per week.
“We do kind of a learner assessment,” Bowman says. Patients receive a lot of educational materials and are taught at their own pace. Families are invited to come to dialysis with them. The UVA system owns eight outpatient dialysis clinics across Central Virginia.
About 11 patients have gone through the pilot project. “We believe we’re going to see fewer admissions and readmissions, and lower infection rates,” Bowman says. “So far, from what we’ve seen, it looks pretty good.”
Fluid overload continues to be a risk for patients even after they’ve cleared the most dangerous first few months of dialysis. It occurs when patients fail to follow the restrictions on salt and fluid consumption between treatments. Severe fluid overload can necessitate an emergency department visit for urgent dialysis, Hladik notes.
On average, end-stage patients are hospitalized nearly twice a year, often because of cardiovascular problems. About 30 percent of admitted dialysis patients have an unplanned readmission within 30 days, compared with 15 percent of similar patients without kidney disease.
To improve care outcomes and lower readmission rates for admitted patients with kidney disease, an integrated care program was launched at five UNC Health Care dialysis centers. The effort was the product of a collaboration among UNC Health Care, the UNC Division of Nephrology and the Renal Research Institute, a subsidiary of the dialysis company Fresenius Medical Care that runs the centers.
The program has a dedicated outpatient advanced practice provider who sees patients for a comprehensive visit at the dialysis center within one week of discharge. The provider conducts medication reconciliation, and implements and coordinates follow-up therapy. The visit occurs when the patient is off dialysis, permitting a detailed review of recent medical issues and a complete physical exam.
Through the program, communication between outpatient and inpatient dialysis teams is enhanced. For example, a dedicated inpatient nurse practitioner creates a dialysis-specific discharge summary that outlines key aspects of the hospital course and essential aspects of follow-up care. On-site psychology services are available through a clinical social worker for dialysis patients who are experiencing behavioral health problems that could impact their kidney disease outcomes.
The program has improved communication significantly, and has taught providers to focus on patients who are prone to frequent ED visits and hospitalizations, Hladik says. The implementation of psychosocial services has uncovered a high incidence of behavioral health issues in the dialysis population. “It is too early to conclude whether the program has significantly influenced readmission rates, but we have already observed improved patient satisfaction and care coordination,” he says.
UVA is also hoping that counseling for its patients with kidney disease will lower the readmission rate and improve outcomes. In partnership with the Jefferson Area Board for Aging, a local nonprofit, UVA in May began piloting a transitions-to-home program for dialysis patients. Under the initiative, the JABA provides a health coach who visits patients in the hospital and at home after discharge to help them understand their health condition and how to manage it, review medications and prepare patients for follow-up appointments.
The health system’s accountable care organization already offers the program to patients with complicated medical problems, and it lowered their readmission rate by 25 percent, Bowman says, so he hopes it will help patients with advanced kidney disease. — Geri Aston is a contributing writer to H&HN.
Reaching out to prevent kidney damage
Community outreach can be key in identifying and treating at-risk patients with kidney disease before they suffer serious, irreversible organ damage, says Li-Li Hsiao, M.D., assistant professor at Harvard Medical School.
When Hsiao arrived in Boston in 1999, phone calls from Chinese people asking for medical advice quickly led her to believe that she was the only Chinese-speaking nephrologist in the area. To meet the needs of the Boston area’s Chinese population, Hsiao created the Asian Renal Clinic in space provided by Brigham & Women’s Hospital. The clinic now offers kidney care to Chinese, Southeast Asian, Korean and Japanese patients in their native languages.
The clinic has a strong outreach component. It offers free kidney disease screenings on-site and throughout the Boston area. The mobile component holds screenings in underserved areas about seven times a year. The effort relies on volunteer work by college students who aspire to have careers in medicine.
“This is very meaningful because we are educating the next generation of physicians in passion and compassion,” says Hsiao, who is the clinic’s director.
The mobile screening program has 15 chapters at universities across the country. The concept is spread by students who learn about it while participating in the Harvard Summer Research Program in Kidney Medicine, Hsiao explains. She helps the students identify a local physician mentor who teaches them how to write grants to fund their screening programs. “We teach them skills they’ll need for the future,” she says.
Outreach education also has been launched in North Carolina, where the University of North Carolina Kidney Center has developed the Kidney Education Outreach Program with support from the state Legislature, UNC Health Care, and the Kate B. Reynolds Charitable Trust of Winston-Salem. The program has targeted education and screening efforts in counties with high chronic kidney disease prevalence. Participants receive information about kidney disease risk factors, such as hypertension and diabetes, and those at risk are offered screening. The program features a truck with facilities that enable on-site screening.
Patients are encouraged to approach their providers with the question, “Hey Doc, how are my kidneys?” — a phrase that is posted on the mobile unit and on billboards in at-risk communities. “We hope to get at-risk individuals into local care with the ultimate goal of preventing or delaying chronic kidney disease progression,” says Gerald Hladik, M.D., chief of the UNC Division of Nephrology and Hypertension.
The University of Virginia Kidney Center Clinic offers two screening events, one held adjacent to the African-American art festival each July in Charlottesville. As part of this broad UVA screening event, nephrologists man a booth where patients who just screened positive for diabetes are tested for kidney disease via a urinalysis.
“We take our urinalysis machine out there, and we’re able to hook it up with a generator,” says Brendan Bowman, M.D., UVA Health System regional medical director for dialysis. “It sounds kind of screwy, but we’re able to provide privacy.” Patients receive their results on the spot and are counseled and referred, usually to their primary care doctor or a free clinic.
“People are thinking about diabetes all the time,” Bowman says. “They don’t realize that about 30 percent of folks with diabetes will go on to develop kidney disease.”
Dialysis provider organizations are a mixture of large, investor-owned companies, hospital-affiliated centers and small independent providers. The U.S. Renal Data System’s 2016 annual report captures this and other trends in the dialysis landscape.
- Two chains, DaVita Inc. and Fresenius Medical Care, as of 2014 owned 65 percent of the country’s more than 6,700 dialysis units and treated 69 percent of end-stage patients. By comparison, hospitals owned just 9 percent of dialysis centers, treating 4 percent of patients.
- For most patients, the safest way to provide vascular access for dialysis is a fistula, the joining of an artery to a nearby vein to make a bigger blood vessel. At 39 percent, DaVita had the highest proportion of new dialysis patients relying on a fistula alone for dialysis access, followed closely by Fresenius at 37 percent. Thirty percent of patients at hospital-based centers started dialysis with fistulas.
Known causes of death among patients with end-stage renal disease, 2012-2014
- 38.7% Arrhythmia/cardiac arrest
- 16.4% Dialysis withdrawal
- 14% All other causes
- 7.9% Septicemia
- 6.1% Acute myocardial infarction and atherosclerotic heart disease
- 5.4% Congestive heart failure
- 4.4% Malignancy
- 3.5% Other infection
- 2.9% Cerebrovascular accident
- 0.4% Other cardiac
- 0.3% Hyperkalemia (high blood potassium)
Source: “2016 Annual Data Report,” U.S. Renal Data System