Chicago consortium seeks to decrease renal failure and need for dialysis

Chicago consortium seeks to decrease renal failure and need for dialysis
by Anne Boyd
Feb 24, 2010

In a room filled with health professionals, concerned citizens and educators, most knew their cholesterol numbers. Some knew their blood sugar levels. But only a handful knew how well their kidneys functioned.

It’s a scenario that Dr. Paul Crawford, a Chicago nephrologist, said he sees time and again and it concerns him because for minorities renal failure is on the rise.

"Kidney disease is not on our radar,” said Crawford, one of the presenters at a symposium given by the Kidney Informational Consortium Tuesday at the Chicago State University. He’d like to see everyone, but especially minorities be as aware of their glomerular filtration rate, the measure of kidney function, as they are of cholesterol levels.

Early stage kidney disease usually has no symptoms. Knowing their filtration rate could help people catch kidney disease in its early stages, well before dialysis or transplants become necessary.

“There are multibillion dollar organization built on the knowledge, of the statistics that you and I and everyone else in our community is not going to control our diabetes, not going to control our high blood pressure and get kidney failure.”

The Kidney Informational Consortium is a group of the doctors, community-based health care providers and transplant and communications professionals. Its aims are to work within Chicago’s minority communities to prevent kidney disease and open people to the possibility of transplants.

Kidney failure affects African Americans at rates almost four times greater than whites and Hispanics are one and a half times more likely to be impacted than non-Hispanics according to the U.S. Renal Data System. The two leading causes of kidney disease, diabetes and high blood pressure, also disproportionally impact minorities according to Agency for Healthcare Research and Quality and the American Heart Association.

“If diabetes causes 45 percent of kidney failure and hypertension causes 27 percent – more than 70 percent of kidney disease is preventable,” Crawford said.

He pointed out that kidney disease is considered almost shameful and transplants somewhat dangerous within minority communities. These misunderstandings, he and the other presenters said, could be rectified with proper education.

Crawford and other presenters explained that transplant is a better option than dialysis, which does not filter the blood as well as a kidney and ties the patient to dialysis schedule, often preventing travel. Transplanted kidneys generally last 15 to 20 years and pose little risk to the donor.

The problem is that the “average wait for a kidney in Chicago is six years,” Crawford said. During that time quality of life, for many patients, decreases and the risk of death rises.

Amy Waterman, a health psychologist at Washington University in St. Louis, agreed that there is a need for education. Speaking at the even, she also said a key factor in getting more people to act is discovering what motivates them to change behavior. Toward that end, she developed a program called Explore Transplant, a systemic method of educating dialysis patients about dialysis and transplants.

The program is composed of four meetings at which the patient is shown videos of people who decided to get off dialysis in favor of transplantation. The caseworker encourages the patient to discuss what they learn and apply it to their situation. Waterman finds that patients who may be reticent about their own cases are more comfortable discussing a transplant recipient whose circumstances are similar to their own.

She tested the methodology on over 200 hundred patients in dialysis clinics in the St. Louis area, over 80 percent of whom were black. All were eligible for transplants. Some patients went through the Explore Transplant program, the others were given existing education materials.

Those on the Explore Transplant program were more likely to:

• understand basic facts about dialysis and transplant,

• say they had all the facts they needed to make an informed decision,

• read about live donation,

• make a list of potential donors and

• tell people they were looking for living donor.

Waterman also discovered that blacks were more likely than whites to do all of the positive things related to finding a living kidney donor. A year after the study, blacks were also more likely to have a living donor come in to be tested she said.

“My feeling is that living donation makes more sense to African Americans,” said Waterman who is white. “It’s part of the culture of we help each other.”

http://news.medill.northwestern.edu/chicago/news.aspx?id=158293