Patients Can Do More to Control Chronic Conditions

Patients Can Do More to Control Chronic Conditions
In the absence of cures, people can learn how to slow kidney disease, diabetes and other ills

By LAURA LANDRO CONNECT
Updated Jan. 12, 2014 4:47 p.m. ET

By the time Gail Rae -Garwood was diagnosed with chronic kidney disease at age 60, it was already too late for prevention, and there is no cure. But Ms. Rae-Garwood decided she could do something else to preserve her quality of life: slow the progression of the disease.

For the millions of Americans over 50 who have already been diagnosed with chronic ailments like kidney disease, diabetes, heart disease, rheumatoid arthritis and chronic obstructive pulmonary disease, careful management can't turn back the clock, but it can buy time. It takes adherence to medications, sticking to recommended diet and exercise plans, and getting regular checkups.

As simple as that sounds, experts say, patients often don't hold up their end of the bargain, and doctors don't always have the time to help between visits. Chronic ailments may also lead to depression, which itself is associated with poor adherence to medication across a range of chronic illness, according to a 2011 study in the Journal of General Internal Medicine.

"The whole goal in conditions that are lifelong, and aren't going to go away, is to stabilize them and keep them as stable as possible for as long as possible," says Edward Wagner, a researcher and founding director at Seattle-based Group Health Research Institute.

Patients' Role
Dr. Wagner developed a protocol known as the chronic-care model in the 1990s, which has been increasingly adopted by many health-care providers. One of its primary goals, in addition to careful monitoring, is teaching patients self-management skills. "Evidence is mounting that the more engaged and activated patients are in their own care, the better the outcomes," Dr. Wagner says.

Take kidney disease. One of the fastest-growing chronic conditions world-wide, it affects 26 million Americans, and millions of others are at increased risk, according to the National Kidney Foundation. Over time, the kidneys lose their ability to filter waste and excess fluid from the blood; the condition may be caused by diabetes, high blood pressure and other disorders. But patients may not have symptoms until it is fairly advanced. As dangerous levels of fluid and wastes build up in the body, it can progress to so-called end-stage renal disease, or kidney failure. Without artificial filtering, known as dialysis, or a kidney transplant, the disease can be quickly fatal.

But especially in earlier stages, lifestyle changes that ease the burden on the kidneys can have a marked effect, including eating less salt, drinking less alcohol and keeping blood pressure under control. Doctors may suggest a "renal diet" that includes limiting protein, phosphorous and potassium, because kidneys can lose the ability to filter such products.

Sometimes modest changes can make a difference. Even small amounts of activity such as walking 60 minutes a week might slow the progression of kidney disease, according to a study published last month in the Journal of the American Society of Nephrology.

There are plenty of resources to help kidney patients manage their disease, including the kidney foundation website (kidney.org) and classes offered by the dialysis division of DaVita HealthCare Partners Inc. DVA -1.37% The company says it educates about 10,000 patients annually at free "Kidney Smart" classes across the country.

Getting the Word Out
Ms. Rae-Garwood says she decided to become engaged in her own care and share what she learned with fellow patients, after she was diagnosed in 2008 with Stage 3 kidney disease.

"People need to be educated and learn how to manage it so that they are not immediately on dialysis or on death's door," she says.

Ms. Rae-Garwood wrote a 2011 book, "What Is It and How Did I Get It? Early Stage Chronic Kidney Disease," and started a blog to offer its contents free online. She developed an educational program, SlowItDown, which is used by health educators to provide free classes in various communities such as the Salt River Pima-Maricopa Indian Community in Phoenix.

She acknowledges that it isn't always easy to follow her own advice. "The disease is somewhat in control, but I'm getting older," Ms. Rae-Garwood says. "And while I can control my renal diet, it's harder to lose weight, and exercise isn't always an option since I've hurt this or that on my body." She takes blood-pressure and cholesterol medications, and tries to keep stress levels down.

She retired from both a college teaching post and acting last year but still keeps up a Facebook page, Twitter account and her blog to get the word out. "I'm serious about getting the necessary education to the communities that need it," she says.

Ms. Landro is a Wall Street Journal assistant managing editor and writes the Informed Patient column. She can be reached at encore@wsj.com.

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