Yes! Yes! Yes!

I read this New York Times article and jumped up exclaiming, “He understands! He really understands!”  The he to whom I referred is Dr. Joseph Vassalotti of Mount Sinai Medical Center and private practice in New York. He also just happens to be chief medical oficer of the National Kidney Foundation.

If you read this blog, you know I wrote “What Is It And How Did I Get It? Early Stage Chronic Kidney Disease” because I didn’t want anyone else to be in the position I’d been in: newly diagnosed, scared, not taking in what my nephrologist was telling me and not knowing that I could take a more active part in maintaining my kidney function nor how to do that.  Dr. Vassalotti realized how new patients react to the information their doctors give them by simply asking a patient what he had heard.  All the patient heard was the diagnose. But I’ll let you read about this yourselves:

 

Doctors sharpen message on kidney disease

By JANE E. BRODY

Twenty-six million Americans have chronic kidney disease, and avoiding complications depends heavily on how well patients care for themselves.

A patient with early stage kidney disease provided a recent wake-up call for Dr. Joseph Vassalotti, a leading kidney specialist. After explaining the diagnosis in great detail, the doctor asked his patient to repeat what he had heard in his own words.

With a rather bored look on his face, the man said, “Kidney disease, yada yada yada yada.”

Vassalotti, a nephrologist at Mount Sinai Medical Center in New York and chief medical officer of the National Kidney Foundation, was stunned. It was hardly the first time he had explained kidney disease to one of his patients, and he thought he knew how to help them recognize its seriousness and to motivate them to do what they could to forestall the day when their kidneys failed and dialysis or a transplant would be the only option for survival.

“I learned a lot from this patient,” Vassalotti told me. “Clearly my explanation was not pitched correctly to fit his level of understanding and his attitude toward his health.”

Twenty-six million Americans have chronic kidney disease, which has a number of causes — most often diabetes and high blood pressure. As the kidneys begin to fail, the body’s waste products build up in the bloodstream, leading to anemia, nerve damage, heart disease and other ailments.

As with heart disease and diabetes, avoiding these complications depends heavily on how well patients care for themselves. But the disease is symptomless, at least in the early stages, and many patients fail to appreciate that they are gradually heading toward a precipice.

The medical profession has been trying harder in recent years to communicate better with patients, but clearly there are serious impediments. Doctors are grappling with shortage of time and lack of training on how best to get needed information and advice across in terms that patients can hear and understand.

Too often, doctors speak in medicalese, a foreign language to their patients. Or they may be reluctant to place all the cards on the table, concerned that patients may become so fearful they fail to hear important information. Unlike Vassalotti, some doctors never ask patients what they understood.

Medicare now reimburses for educating patients with relatively advanced kidney disease, but not for those in the early stages.

MANY CARELESS PATIENTS

Communication is a two-way street, however, and patients with chronic kidney disease also are contributing to its failure in several ways. Many lack health literacy. Unable to understand even simplified medical terms, they may misinterpret what a doctor tells them or forget it entirely.

They may be too intimidated to ask questions or request a clarification. They may regard all medical matters to be the doctor’s purview. Or they may be fatalists who assume whatever will be, will be.

What kidney patients do, and don’t do, can make a huge difference in the quality and length of their lives. Whether they follow through on medical advice depends heavily on what they know about their disease and  what can make matters better or worse, Vassalotti said in an interview.

In a study published in March in The American Journal of Kidney Disease, a research team at Vanderbilt University Medical Center in Nashville uncovered serious knowledge gaps among 401 patients with various stages of the disease.

The team, headed by Dr. Kerri L. Cavanaugh, a nephrologist, pointed out that within the general population, most people with kidney disease don’t know they have it. And among those who do know, a previous study of 676 patients with moderate to advanced kidney disease had found that more than a third knew little or nothing about it and nearly half knew nothing about treatment options should their kidneys fail completely.

Participants in the Vanderbilt study were being treated at the university’s nephrology clinic for chronic kidney disease. They ranged in age from 46 to 68; 53 percent were men, 83 percent were white and 94 percent had completed high school or higher. More than half had seen a nephrologist at least three times in the past year, and 17 percent had attended a kidney education session.

When asked whether they had chronic kidney disease, however, more than a third answered “no.” The 28-question survey revealed that only about 1 in 5 knew that protein in the urine was a sign of poor kidney function and that kidney disease often progresses without causing any symptoms.

Only 2 in 5 knew that controlling blood sugar is important in kidney disease, although more than 90 percent knew it is important to control blood pressure.

The usual lack of symptoms as kidney disease progresses is especially critical for patients to understand, because many fail to seek medical care or follow medical recommendations when they feel well.

Dr. Julie Anne Wright, an author of the Vanderbilt study, said that it “highlights the need for providers to ensure that communication is not only delivered but understood by all parties involved.”

LIFE-ENHANCING FACTS

Here is what everyone with chronic kidney disease and those at increased risk of developing it should know.

• There are four main risk factors for kidney disease: diabetes, high blood pressure, age over 60 and a family history of the disease. Anyone with these risk factors should have a test of kidney function at least once a year, Vassalotti said. Members of certain ethnic groups are also at higher than average risk: blacks, Hispanics, Pacific Islanders and Native Americans.

• Two simple, relatively inexpensive tests, easily done during a routine doctor visit, can detect declining kidney function: a blood test called eGFR (for estimated glomerular filtration rate, a measure of kidney function) and urine albumin, which shows whether the kidneys are spilling protein.

• Early detection can delay progression to kidney failure, when dialysis or transplant is the only option. Good control of blood sugar, blood pressure, cholesterol levels and body weight can delay the loss of kidney function. Not smoking and getting regular physical activity and sleep are also important.

• Certain drugs and dyes are toxic to the kidneys and should be avoided by people with kidney disease. The drugs include painkillers like acetaminophen, aspirin and ibuprofen; laxatives and antacids that contain magnesium and aluminum (Mylanta and Milk of Magnesia); ulcer drugs like Tagamet and Zantac; decongestants like Sudafed; enemas that contain phosphorus (Fleet); and Alka-Seltzer, which is high in salt. Contrast dyes used for certain tests, like angiograms and some MRIs, can
also be harmful to kidney patients.

• When kidney disease progresses, patients can develop symptoms like changes in urination; swelling in the legs, ankles, feet, hands or face; fatigue; skin rashes and itching; a metallic taste in the mouth; nausea and vomiting; shortness of breath; feeling cold even when it is warm; dizziness and trouble concentrating; and back or leg pain. If any of these occur, they should be brought to a doctor’s attention without delay.

You can read the article for yourselves at: http://topics.nytimes.com/topics/reference/timestopics/people/b/jane_e_brody/index.html?inline=nyt-per
I immediately e-mailed Dr. Vassalotti and Ms. Brody to thank them for making this common knowledge.  I only wish there was enough money in my bank account to get a copy of the book into every newly diagnosed chrnic kidney disease patient.
 
Until next week,
 
Keep living your life!

 
 
 
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