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November is Diabetes Awareness month, a time when diabetes advocacy groups and research organizations call attention to the chronic and potentially debilitating condition. I am among the nearly 10 percent of the US population that has diabetes, according to an American Diabetes Association (ADA) estimate.

Diabetes is a major risk factor for heart disease, kidney failure, blindness, amputations, and sexual dysfunction. The ADA estimates that the national cost of diagnosed diabetes in the United States is $245 billion in medical expenses and costs stemming from work loss, disability, and premature death. Clearly, better treatments and approaches to care are desperately required. PCORI is funding a suite of projects (click here to see selected projects) that consider outcomes important to patients and aim to produce evidence relevant to patients’ needs. To do this, the researchers engage patients and other stakeholders to guide the study design and conduct.

As someone who has lived with type 1 diabetes for most of my life—I was diagnosed when I was nine years old—I can attest that simply focusing on medical aspects of the illness won’t move the needle much. That’s because managing diabetes involves not just the medicines we take or the instructions we’re given by doctors, but the realities of our daily lives.

In type 1 diabetes, the body’s immune system destroys insulin-producing cells in the pancreas, so I must take insulin to stay alive. Other people have type 2 diabetes, in which the body doesn’t properly handle glucose, often as a result of obesity.

I wear an insulin pump. But for many years, I refused to do so, primarily because I was concerned that the device would interfere with my activities. The pump, which delivers insulin via a catheter, makes some aspects of treatment easier, but it doesn’t take away the guesswork and frequent errors in insulin dosing. If I underestimate my carb count at meals—as I often do—the pump won’t give me enough insulin, and my blood sugar will rise too high. Eventually, high blood sugar levels could damage my organs. If I overestimate carbs, or exercise without cutting back on the insulin, my blood sugar will drop too low, potentially making me lose consciousness.

I make these life-or-death decisions several times a day. My doctor isn’t there to help me. In fact, because I live alone, if my blood sugar drops too low, nobody will give me sugar or call an ambulance.

There are devices called continuous glucose monitors that measure and display blood sugar levels every few minutes and warn users if levels go out of the safe range. These are very helpful in managing the condition, and I'll probably get one at some point. I don’t use one now, though, in part because of the dual burden of wearing an additional device and having another catheter stuck into my body. Greater out-of-pocket cost is another major concern.

Cost also prevents many others from achieving optimal control of their disease. People with type 2 diabetes are often economically disadvantaged and unable to afford the out-of-pocket costs of some of the newer medications.

Beyond that, barriers to successful diabetes management include lack of access to healthful food and safe places to exercise as well as inability to read and understand instructions. Moreover, lifestyle advice that doesn’t take into account cultural or ethnic practices—around food, for example—is likely to fail.

So when researchers study what works and what doesn’t in diabetes, they must address patient-centered factors that may impede adoption of even the best that medicine has to offer. The only way to identify those factors is to ask—and involve patients in designing studies.

That’s why PCORI’s patient-centered model for conducting research is so crucial in studying diabetes. After all, we patients are our own “primary care providers.”

Tailoring diabetes care

Most of the diabetes studies PCORI is funding focus on providing alternatives to the typical one-size-fits-all approach to diabetes. The factors unique to patients, their families, and their caregivers must be considered in any plan for combating the disease.

For children with type 1 diabetes, a family-centered approach may help young patients manage their blood sugar. A study in Wisconsin (see video) has enrolled 214 children; half receive standard care and the others take a 10-minute survey to identify a family’s unique challenges in managing care. Doctors then use the survey results to refer each family to resources that best fit their needs. The researchers hypothesize that the surveyed group will better manage their blood sugar levels.

Some 75 percent of type 2 diabetes patients do not take insulin. Is it helpful for them to self-monitor blood glucose? A study in North Carolina is following 450 such patients to compare the impact of three approaches to glucose monitoring. The first two—no daily testing and daily testing with standard feedback—are typical approaches. The third approach, daily testing with enhanced feedback, including tailored messaging after each test, was developed as a more hands-on, patient-centered approach. Researchers will assess patients’ responses to each of the three treatments, and also healthcare providers’ experiences using the system to deliver glucose testing results in busy clinics.

Socioeconomic, demographic, and other patient-centered factors may help doctors predict what treatment approaches work best for specific patients. A study in Massachusetts is combining 25 years of electronic health record data with information in a database on diabetes patients’ quality of life. The study examines whether age, gender, employment status, education level, income, language, and other factors influence patients’ responses to a treatment. The team plans to develop a web application that a doctor can use to estimate how likely a specific patient is to respond to a given treatment.

Studies of underserved populations

While diabetes and its debilitating effects take a toll on the entire nation, that toll is much higher among minority groups. In parts of Alabama, as many as half of all patients with chronic illnesses do not take medications as recommended by their doctors. A study in Alabama uses peer coaching with an educational component, including storytelling, to encourage patients in a predominantly black rural area to take their medications despite often deep-seated mistrust of the healthcare system.

American Indians are also disproportionately likely to suffer from diabetes. In a California study, the research team is working with patients, community representatives and doctors in an urban American Indian population to examine how stress, grief, and mental health conditions can contribute to the progression from obesity to diabetes and stand in the way of lifestyle interventions. Researchers are testing a diabetes prevention program that incorporates psychosocial support. The goal is a program that could be tailored to underserved populations across the country.

Engaging patients and the community in developing research

PCORI also funds projects that encourage meaningful involvement of patients, caregivers, clinicians, and other healthcare stakeholders in comparative clinical effectiveness research. In its Pipeline to Proposal program, PCORI has funded 10 projects focused on diabetes. In addition, the Eugene Washington PCORI Engagement Award program is providing meeting support to a primary care practice–based research network that is bringing clinicians and patients to the table to develop a roadmap for optimum patient-partnered chronic condition management, including for diabetes.

While diabetes is a national health epidemic, the way it affects the lives of each patient and family varies widely. A patient-centered approach to treatment options enables patients to make healthcare choices suited to their needs.


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