For some diabetics, burden of care rivals complications of disease

Many patients with diabetes say that the inconvenience and discomfort of constant therapeutic vigilance, particularly multiple daily insulin injections, has as much impact on their quality of life as the burden of intermediate complications, researchers from the University report in the October issue of Diabetes Care.

A typical diabetes patient takes many medications each day, including two or three different pills to control blood sugar levels, one or two to lower cholesterol, two or more to reduce blood pressure, a daily aspirin to prevent blood clots, plus controls diet and exercise. As the disease progresses, the drugs increase, often including insulin shots.

“The people who care for patients with a chronic disease like diabetes think about that disease and about preventing long-term complications,” said study author Elbert Huang, Assistant Professor in Medicine. “The people who have a chronic disease think about their immediate lives, which includes the day-to-day costs and inconvenience of a multi-drug regimen. The consequences are often poor compliance, which means long-term complications, which will then require more medications.”

Despite growing reliance on such complex multi-drug regimens, large proportions of patients with Type-2 diabetes continue to have poorly controlled glucose (20 percent), blood pressure (33 percent) and cholesterol (40 percent).

“This tells us that we need to find better, more convenient ways to treat chronic illness,” Huang said. “It is hard to convince some patients to invest their time and effort now in rigorous adherence to a complex regimen with no immediate reward, just the promise of better health years from now,” Huang said.

“This certainly rings true to me,” agreed diabetes specialist Louis Philipson, Professor in Medicine, who was not part of the research team. “Some patients, if you judge by their behavior, would rather be well on the road to future blindness, kidney failure or amputations than work hard now at their diabetes.”

Huang and colleagues conducted hour-long face-to-face interviews with a multi-ethnic sample of 701 adult, Type-2 diabetes patients, who were attending Chicago area clinics between May 2004 and May 2006. They asked patients to rank the benefits of various treatments and the daily quality-of-life burdens of diabetes-associated complications.

Patients were asked to express their preferences in a series of trade-offs. The surveyors asked, for example: would you rather have six years of life in perfect health, or 10 years with an amputation?

As expected, patients were most distressed by end-stage complications, especially kidney failure, a major stroke or blindness. They were slightly less concerned about amputations or diabetic retina damage, and still less about angina, or diabetic nerve or kidney damage.

Patients also disliked intensive treatments, especially intensive glucose control, with multiple daily insulin injections, and what the authors called comprehensive diabetes care, which was intensive glucose control plus other medications.

On average, patients ranked the burden of comprehensive diabetes care and intensive glucose control as equal to the burden of angina, diabetic nerve damage or kidney damage.

Patients varied widely in how they ranked treatments and complications. Those who had experience with a specific medication or complication saw them as having less of an impact on quality of life than those without such direct experience.

But many patients found both complications and treatment onerous. Between 12 and 50 percent were willing to give up 8 of 10 years of life in perfect health to avoid life with complications. More surprising, between 10 and 18 percent of patients were willing to give up 8 of 10 years of healthy life to avoid life with treatments.

The existing burden of treatment may even increase when results from the ongoing ACCORD trial are announced in 2010, said Huang. “This trial may produce evidence for even greater use of medications to try to prevent complications,” he said

“Our study results show that taking multiple medications on a routine basis represents a significant burden for many patients,” the authors conclude. “Quality of life related to treatments will be likely to improve if we can simplify or modify current treatments through treatment innovations.”

Until specialists find ways to do that, Philipson added, “physicians need to be able to spend more time with patients.” This includes finding ways to billÊappropriately for phone- and Web-based interactions. “We also need more ancillary services like psychiatric social workers and diabetes educators to meet with patients,” he added. “That could save the health care system a ton of money, even without developing new drugs or treatments. But we have to do that as well.”

The Centers for Disease Control and Prevention, the National Institute of Aging, the National Institute of Diabetes and Digestive and Kidney Disease, and the Chicago Center of Excellence in Health Promotion Economics funded the research.