Sept. 27, 2007 - Diabetes is now largely manageable, thanks to today’s treatments. But while these treatments keep patients healthy, some perceive them to be almost as bad as the disease itself, new research shows.
Add to this the frequent finger pricks to monitor blood sugar, and strict instructions on diet and exercise, and many patients find the day-to-day burden of managing their disease to be too much, says Elbert Huang, MD, of the University of Chicago.
“The idea that treatments are a burden to patients has largely been dismissed, yet we know that a large number of patients are not managing their disease as well as they could,” Huang tells WebMD. “In this study, we showed that for a minority of diabetes patients, comprehensive treatments negatively impact their quality of life in a significant way.
Diabetes Treatment Burden
Huang and colleagues conducted hour-long, in-person interviews with 701 adult patients with type 2 diabetes who were being treated at clinics in Chicago between May 2004 and May 2006.
In an effort to better understand patient perceptions about the benefits and burdens of various treatments, the patients were asked to consider individual treatments and a spectrum of potential complications of poor diabetes management, ranging from angina and minor stroke to blindness, amputation, and kidney failure. Sixty-five percent of deaths in people with diabetes are due to heart disease and stroke.
As expected, the patients were most concerned about end-stage complications of diabetes like kidney failure, major stroke, and blindness. They were somewhat less concerned about amputation and lesser vision damage.
While the majority of patients indicated that life with treatment was not particularly burdensome, a surprising minority felt differently.
Between 10% and 18% of patients reported that they would be willing to give up eight to 10 years of life in good health to avoid life with treatments.
The study appears in the October issue of the journal Diabetes Care.
Simpler Diabetes Treatments Needed
As many as 20.8 million adults and children have diabetes, according to the American Diabetes Association.
Studies suggest that a large percentage of patients with diabetes have poorly controlled blood sugar, blood pressure, and cholesterol because they are not being optimally treated.
Huang says the problem may only get worse as the definition of optimal treatment evolves to include even more drugs and more complicated therapeutic regimens.
“Real innovations in the delivery of treatments are needed to improve the day-to-day experiences of patients with diabetes,” he says.
Ann Albright, PhD, RN, who has been managing her own type 1 diabetes for four decades, says patients often feel overwhelmed by the challenges of managing their disease.
Albright is president of health care and education for the American Diabetes Association (ADA), and she is director of the Division of Diabetes Translation for the CDC.
She says patients fare better when they play an active role in their own treatment and have a clear understanding of what they are doing and why.
“Patients need to embrace the concept that this is a self-managed disease,” she tells WebMD. “That doesn’t mean management in isolation, but it does mean taking an active role because patients are the ones who have to live with the treatment.”
Nurses, dietitians, pharmacists, and other health care providers whose main job is to educate and motivate patients play a critical role, she says.
Because there are so many facets to managing diabetes, burnout, even among the most diligent patients, is common, she adds.
“As a practitioner and as someone who has lived with diabetes for 40 years, I can tell you it takes a lot of effort to manage this disease,” she says. “But the effort is worth it because the alternative is so much worse.”
ADA President for Medicine and Science John B. Buse, MD, PhD, tells WebMD that the potential downside of increasingly intensive treatment regimens is well-understood.
Buse is also director of the Diabetes Care Center at the University of North Carolina School of Medicine at Chapel Hill.
“The reason we are doing studies to determine if more intensive treatment results in better outcomes is because in all honesty we don’t know the answer,” he says.
He says while some patients do feel defeated by the effort involved in managing their disease, others may be too focused on it.
“If a patient with good [blood sugar] control tells me he didn’t have a piece of birthday cake at his grandson’s birthday party, I would think that’s extreme,” he says. “You have to live your life. It is important that patients have a sense of accomplishment, hope, and balance.”