More needed to treat diabetes

When it comes to managing his diabetes, the problem is not a lack of effective medication or technology, says psychologist David G. Marrero, PhD, who was diagnosed with Type 1 diabetes at age 25. The biggest obstacle is himself.

"Diabetes is somewhat unique among chronic diseases in the extent and degree to which your behavior—and viewpoints about behavior—impact the outcome," says Marrero, who directs the UA Center for Border Health at the University of Arizona Health Sciences.

Several times a day, Marrero must check his blood glucose levels. Each time he eats something or exerts himself, he must determine how those activities will affect those levels. At bedtime, he sometimes wonders if he will wake up again. The endless grind of taking care of himself can be psychologically grueling, he says.

Marrero is one of the 29 million Americans now living with diabetes, according to the U.S. Centers for Disease Control and Prevention (CDC). Another 86 million Americans have pre­diabetes, which increases the risk of developing Type 2. Certain racial and ethnic groups face a higher risk of diabetes than their white counterparts, including African-Americans, Latinos, American Indians, Pacific Islanders and some Asian-Americans.

Ninety-five percent of Americans with the disease have Type 2 diabetes, which means their bodies don't use insulin properly. Five percent have Type 1, which means their bodies don't produce insulin at all. With both types, an insulin shortage means that blood sugar can't enter cells to be used for energy. Instead, sugar accumulates in the blood. The effects of high blood glucose can include heart disease, stroke, kidney failure, blindness and lower-body amputations.

There are also a host of psychological problems that co-occur with diabetes, such as depression, anxiety, disordered eating behavior and diabetes distress. Those challenges—along with the behaviors that accompany them—can worsen medical outcomes.

Fortunately, psychological interventions can treat those conditions, improve behaviors such as medical adherence, delay the disease's onset and even prevent diabetes from developing in the first place. The only problem? There aren't enough psychologists involved in preventing and treating diabetes, says Suzanne Bennett Johnson, PhD, a research professor in the department of behavioral sciences and social medicine at Florida State University and a former APA president.

Many psychologists aren't aware of the needs of this special population, even though the size of the epidemic almost guarantees that most psychologists—whether they're working in an integrated-care setting or out in the community—will end up treating clients with diabetes, says Johnson. "A lot of psychologists might be surprised at how important the interplay of psychosocial issues and diabetes is," she says. "And many psychologists don't realize how much they have to offer this patient population."

That may change soon, says Johnson. "People who care for people with diabetes have increasingly recognized the psychological concerns of people who live with diabetes," she says. One major effort that is drawing attention to these psychological issues is the American Diabetes Association's (ADA) new position statement on psychosocial care for people with diabetes, which underscores the importance of mental health services for this population (Diabetes Care, 2016). In addition, more research is documenting the need for psychologists' services in preventing and treating diabetes, evidenced by a special issue of the American Psychologist (October 2016) devoted to the topic. And APA and ADA are teaming up to create a training program to prepare psychologists to work effectively with people with diabetes, plus a registry of psychologists with specialized training so physicians and other medical professionals can find them (see sidebar).

"It can't be medical on one side and mental health on the other," says psychologist Alicia McAuliffe-Fogarty, PhD, who is coordinating the new training effort as vice president of the lifestyle management team at the ADA. "People with diabetes need extra support because they're trying to manage their lives just like everyone else, but with a whole other full-time job that they never get a vacation from."

A reciprocal relationship

"Diabetes and psychological conditions go hand-in-hand," says psychologist Mary de Groot, PhD, an associate professor of medicine at Indiana University School of Medicine.

Depression is the most common problem, with a quarter of people with diabetes experiencing depression at some point in their lifetimes, she and colleagues explain in a review of the literature (American Psychologist, 2016).

And whether it's clinical depression or depressive symptoms, the consequences go far beyond quality of life. "When people have both diabetes and depression, they have greater variability in blood sugar control as well as greater severity of diabetes complications," says de Groot, noting that people with depression find it harder to perform needed self-care, such as remembering to check blood glucose levels and eating right.

The relationship is reciprocal, too, with individuals who are depressed facing a greater risk of developing diabetes, according to the literature review. Antidepressants are a risk factor for developing Type 2 diabetes, for example. And once people have diabetes, the significant lifestyle changes and self-care activities required to manage the disease can lead to depression. Depression rates are also higher among those who use insulin, thanks to the intense self-management regimen it requires.

Anxiety is also common, says de Groot, with adults with diabetes 20 percent more likely to have anxiety disorders. (Post-traumatic stress disorder is the only anxiety disorder with evidence suggesting it increases diabetes prevalence, she adds.) Anxiety can also worsen outcomes. For example, some people develop a fear of hypoglycemia, a complication of diabetes. If not treated immediately, hypoglycemia can cause short-term cognitive impairments and result in coma or death. As a result, some feel anxious about when an episode might occur—to the point where they may keep their blood sugar levels higher than recommended to avoid the situation. Other people with diabetes have needle phobias that make them reluctant to do the finger sticks necessary to check sugar levels.

Another frequent issue patients struggle with is disordered eating. People using insulin, for instance, must estimate how many carbohydrates every meal contains. If they experience low blood sugar, the treatment is to consume something sweet. "Many times people need to eat even when they're not hungry or need to eat food as medicine," says de Groot. "That changes people's relationship to food."

Some individuals with diabetes can't control their hunger, adds psychologist Deborah Young-Hyman, PhD, a health scientist administrator in the Office of Behavioral and Social Sciences Research at the National Institutes of Health (NIH). The disease processes of diabetes and its treatment can affect hunger and satiety, but their effect on eating behavior has until recently received little attention, she says. "We now have tools to help patients with appetite control via cognitive-behavioral therapy and pharmacologic interventions integrated into medical care regimens," she says.

The sheer stress of managing one's diabetes can also affect health outcomes, says Marisa E. Hilliard, PhD, an assistant professor of pediatrics at Baylor College of Medicine and Texas Children's Hospital in Houston. In a review of the literature on stress and A1C—a measure that indicates the average blood sugar level of the preceding two or three months—Hilliard and co-authors found that stress specifically related to living with diabetes had the greatest relationship with glycemic outcomes (Current Diabetes Reports, 2016). "Diabetes distress is also sometimes called ‘burden' or ‘burn-out,'" says Hilliard. "But it all means the same thing: the cumulative exhaustion of living with a complex chronic condition."

This growing awareness of the bi-directional nature of diabetes and psychosocial issues was the impetus for the ADA to develop its position statement on psychosocial care for people with diabetes, says Young-Hyman. "If you simultaneously care for psychological well-being and medical outcomes, you're going to get better outcomes in both," she says.

Aimed at physicians and other diabetes-care providers, the statement reviews the evidence on the prevalence of psychosocial issues among people with diabetes and offers evidence-based recommendations. The statement urges medical providers to assess individuals for diabetes distress and other psychological conditions as well as their ability to perform the behaviors needed to prevent, delay or treat diabetes. It also asks providers to refer people to psychologists or other behavioral health specialists who are knowledgeable about diabetes when they spot psychosocial issues.

The statement also encourages practitioners to consider age and other factors that can affect both physical and psychological outcomes. As people live longer with diabetes, for example, there's a growing population with dementia who may no longer be able to manage their diabetes, Young-Hyman points out.

Prevention and treatment

Psychologist researchers have long been working to find new ways to prevent and treat diabetes and the psychological issues that so often accompany it. One of the most influential studies was the NIH-funded Diabetes Prevention Program, a large, multi-center trial comparing the effectiveness of the drug metformin versus lifestyle changes in preventing the development of Type 2 diabetes (New England Journal of Medicine, 2002).

"The medication was quite effective, but it turns out that the lifestyle intervention was even more effective," says psychologist Elizabeth M. Venditti, PhD, who directs the Diabetes Prevention Support Center at the University of Pittsburgh School of Medicine and was one of the trial's researchers. By helping people lose 7 percent of their weight and be active 150 minutes each week, the intervention reduced diabetes incidence among the intervention group by 58 percent, compared with 31 percent for the drug group. "It gave people this message of hope—that your glucose is not your destiny—and told them that there are some well-established lifestyle change strategies that can help you better manage eating, activity and weight," says Venditti.

Since then, she says, the focus has been on putting those findings into action and extending the reach of such programs to many different kinds of communities (American Psychologist, 2016). While reimbursement issues and other factors have kept such prevention programs from being widely available, that may change soon, she adds. The Centers for Medicare and Medicaid Services announced in November that, starting in 2018, Medicare would start paying for beneficiaries to participate in an intervention based on the Diabetes Prevention Program.

Once people with diabetes lose weight, behaviors such as food diaries and regular weigh-ins can help them keep the pounds off, says psychologist Delia Smith West, PhD, who directs the Technology Center to Promote Healthy Lifestyles at the University of South Carolina. In a summary of the large, multi-center Look AHEAD trial, West and co-authors note that at the eight-year follow-up, participants engaged in an intervention focused on such techniques had an average weight loss of 4.7 percent of their initial weight, compared with 2.6 percent in the control group (American Psychologist, 2016).

The study dispelled the myth that long-term weight loss is unsustainable, says West. "What Look AHEAD shows us was that there was some regain, but that over time people didn't just keep regaining more and more weight," she says. "It leveled off."

Psychologists in health-care settings are also helping to treat diabetes. One key role is to develop interventions to improve medication adherence and self-management, says Jeffrey S. Gonzalez, PhD, an associate professor of psychology at Ferkauf Graduate School of Psychology and an associate professor of medicine at Albert Einstein College of Medicine. In addition to intense monitoring and multiple medications, diabetes treatment also involves significant lifestyle changes related to diet and exercise—something that can be difficult for many people, even for individuals without diabetes, says Gonzalez.

As a result of these and other factors, few achieve the recommended level of glycemic control, say Gonzalez and co-authors in a review of the evidence (American Psychologist, 2016). "Something like 50 percent of people in the U.S. who are treated for diabetes are at the goal for blood sugars, with 50 percent above," says Gonzalez. When you take two other key markers into account—blood pressure and cholesterol—less than 20 percent of patients are meeting targets for these biomarkers, which would reduce their chances of diabetes complications.

Hoping to improve those numbers, Gonzalez is one of many psychologists developing an intervention to improve treatment adherence and self-management among individuals living with diabetes. He is now working with the New York City Department of Health to test a telephone-based self-management support program that provides diabetes education, teaches problem-solving and other skills and includes distress management counseling for those who need it. Only 7 percent of the 600-plus participants he has recruited so far say they have ever received any formal diabetes education.

Special populations

Certain groups with diabetes, such as children and adolescents, can face additional challenges. "We want to avoid kids being overburdened with this complex, relentless daily treatment regimen," says psychologist Barbara J. Anderson, PhD, a professor of pediatrics at Baylor College of Medicine and Texas Children's Hospital. "Many adults can't do it, much less a 14-year-old." Families can be part of the problem, says Anderson. In a phenomenon she calls "miscarried helping," families cross the line between helping and being overbearing or between providing support or providing too much supervision. "It's asking again and again, ‘Can I help you do this? Can I help you do that? Can I help you do your homework?'" she says. "Pretty soon you're sick of me, because I'm trying too hard."

Parents can also model anxiety for their children, says Kimberly A. Driscoll, PhD, an assistant professor of pediatrics at the University of Colorado Denver, who has reviewed the literature on fear of hypoglycemia in the Type 1 pediatric population (Current Diabetes Reports, 2016). "We generally tend to find that parental fear is higher than children's or adolescents' fear," she says, adding that parents' fears can lead them to quit work or get up multiple times in the night to make sure their children are OK. In addition to adding fear of hypoglycemia to her screening procedures, Driscoll is developing an intervention to help parents and kids gradually lessen excessive monitoring and the tendency to keep blood glucose levels too high.

Unfortunately, say Anderson, Hilliard and Priscilla W. Powell, PhD, in a review of the evidence on pediatric behavioral interventions, programs proven to work in labs don't always work in real life, often because of a lack of resources (American Psychologist, 2016). Delivering interventions face to face is extremely expensive, Anderson points out. She is now translating a family teamwork intervention—shown to decrease conflict and improve blood glucose control—into an internet version.

Anderson is also committed to improving physicians' and nurses' understanding of how they can teach families to help their children manage their self-care. She and Hilliard offer monthly psychosocial case rounds where they walk pediatric endocrinology fellows through challenging cases from a psychological perspective.

Other psychologists are focusing on diabetes-related disparities. At the University of Arizona Health Sciences, Marrero is addressing disparities in Arizona's border regions by incorporating mental health treatment into two clinics in the border cities of Yuma and Nogales that serve primarily Mexican-American patients. Making messages culturally appropriate is key, says Marrero, who hopes to send Spanish-speaking lay health workers called promotores out to the homes of people with diabetes to collect information on mental health and behavior.

Mexican-American men, for example, often don't admit to depression, he says. To improve diabetes care, Marrero wants to find ways to encourage men to express their concerns without viewing it as a violation of machismo. He's also battling residents' sense of the inevitability of diabetes.

"Diabetes is so pervasive that people think it's just a fait accompli," says Marrero, a professor of medicine and public health at the University of Arizona. "The idea of prevention takes more aggressive selling."