Is time worth the treatment?

Some patients feel added years aren't a fair trade for pills and shots

In Focus -- Medicine

October 05, 2007|By Deborah L. Shelton | Deborah L. Shelton,CHICAGO TRIBUNE

William Haynes refuses to go on insulin.

The retired Chicago UPS driver was diagnosed with Type 2 diabetes 15 years ago and was supposed to start giving himself insulin injections two years ago. But he says swallowing daily pills for his diabetes, high blood pressure and high cholesterol is enough of a chore.

As a boy, he helped his mother and grandmother with their insulin shots. Now 59, he has decided: "I don't want to be hooked up on insulin for the rest of my life."

Chronic illnesses account for 70 percent of all deaths in the United States, according to the federal Centers for Disease Control and Prevention. But many of those living with the diseases are turning their backs on treatments they consider too confusing, too time-consuming or too physically uncomfortable.

In a new study published last week, a group of University of Chicago doctors found that many diabetics believe the inconvenience and discomfort of their treatments, especially multiple daily insulin injections, were as bad as the complications that can result from not treating their disease.

On average, patients in the study ranked the burden of comprehensive diabetes care and intensive glucose control as on par with experiencing heart-related chest pain, diabetic nerve damage or kidney damage.

Some patients, 10 percent to 18 percent of the total, said their treatments were so arduous that they would be willing to die sooner - some said up to 10 years earlier - if they could stop their medications. Lead author Dr. Elbert S. Huang said the true number of people who felt that way might be higher because those interviewed already were receiving regular medical care.

The study, appearing in the journal Diabetes Care, is the first of its kind to examine patient perceptions of quality of life on diabetes treatments and their thoughts about living with diabetes-related complications.

A random sample of 701 adults who had Type 2 diabetes were interviewed between May 2004 and May 2006. They were being treated at clinics affiliated with the University of Chicago or in private physician offices affiliated with MacNeal Hospital in Berwyn, Ill.

Patients were asked to express their preferences in a series of trade-offs, such as six years of perfect health versus 10 years with an amputation.

The complications patients most wanted to avoid were the end-stage complications, especially kidney failure, major stroke and blindness. They were slightly less concerned about amputations or diabetic retina damage, and even fewer were worried about heart-related chest pain and diabetic nerve or kidney damage.

Twenty-three percent of the study patients had already suffered a complication such as eye, foot or kidney disease; 30 percent had had a heart attack or stroke.

"Some of this might be lack of education and people not understanding the disease process," said Dr. Holly Mattix-Kramer, a specialist in preventive medicine and kidney disease at Loyola University Chicago Stritch School of Medicine. "We need to do a better job educating our patients about what preventive care means and how it may affect their life span."

An estimated 21 million Americans have diabetes, and 54 million have pre-diabetes, which often leads to the disease.

A typical diabetes patient is prescribed two to three medications to control blood sugar, one or two pills to lower cholesterol, at least two pills to reduce blood pressure and a daily aspirin to prevent blood clots. Daily insulin injections are often added as the disease progresses.

"There is wide variation in how people view life with drugs," Huang said. "The majority, about 80 percent, can manage. But there is a vocal subgroup of patients who are willing to give up a lot to avoid medication."

Future guidelines for diabetes care likely will include even more medications. Preliminary data from several clinical trials suggest potential benefits from treating lower levels of high blood sugar, blood pressure and cholesterol.

It's critical for doctors to understand what's going on in their patients' minds, said Dr. Louis H. Philipson, director of the Kovler Diabetes Center at the University of Chicago Medical Center.

"The idea of the here-and-now is very difficult to understand," said Philipson, who was not on the research team. "But the way Dr. Huang's study was designed, you get a sense of whether patients would give up a leg or a kidney, or whether they would measure their blood sugar four times a day and take their insulin. In many cases, they would rather give up a kidney."

Problems with treatment compliance have cropped up with other chronic diseases, such as high blood pressure, heart disease and HIV, which often don't cause symptoms until late in the course of illness. Medicines, on the other hand, can cause side effects.

Huang said the public health community has been largely dismissive of the quality-of-life effects of medications, labeling patients who don't take their prescribed drugs as uncooperative, noncompliant or difficult.

To simplify diabetes treatment, researchers are working on developing a poly-pill that would combine an aspirin, a diuretic, an ACE inhibitor, a beta-blocker, folic acid and a statin.

But if patients view treatment as a burden, Huang said, health care professionals are misleading themselves by thinking that better drugs alone are the solution to getting chronic diseases under control. Clinicians, he said, also should consider patients' preferences and decision-making.

Deborah L. Shelton writes for the Chicago Tribune.

Give and take

Chronic illnesses account for 70 percent of all deaths in the United States, according to the federal Centers for Disease Control and Prevention. But many of those living with the diseases are turning their backs on treatments they consider too confusing, too time-consuming or too physically uncomfortable.

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