The long-term self-care requirements associated with diabetes create stress factors that may contribute to diabetes distress (DD), a clinical condition that endocrinologists and researchers are targeting for early detection and intervention.

Addressing DD is increasingly important as the incidence of diabetes in the United States continues to increase, affecting 9.4 percent of the overall population and 25.2 percent of adults ages 65 years or older, according to the 2017 National Diabetes Statistics report.

DD occurs in 18 to 45 percent of patients with type 1 diabetes mellitus (T1DM) or type 2 diabetes mellitus (T2DM), and approximately one-third of adolescences with diabetes develop symptoms. Key risk factors for DD include diagnosis at a young age, female gender, long-term disease duration, insulin use, complications associated with diabetes, and hypoglycemia.

Other factors influencing the severity and duration of DD include the quality of patients’ relationships with a healthcare provider, their interpersonal relationships, and their emotions, as well as the demands of their self-care regimen, particularly when monitoring and management are complex and expensive.

DD can be hard to identify with precision because the condition overlaps with other physical and mental issues. Patients often report feelings of guilt, anger, frustration, and anxiety. They also commonly describe being discouraged and overwhelmed.

“Having diabetes is comparable to having a second job,” says Susan E. Spratt, MD, a Duke endocrinologist who specializes in the care of patients with diabetes. “It’s a chronic disease that is affected by every food and exercise choice you make every minute of every day.

“Patients must think about it every time they drive and every time they decide to go to sleep,” Spratt says, cautioning that the consequences of poor self-care management can be severe and debilitating."

Patients with diabetes experience several phases of response to the diagnosis, says Kathryn E. Kreider, DNP, APRN, an assistant professor at the Duke School of Nursing and adult endocrinology nurse practitioner in the Division of Endocrinology, Metabolism, and Nutrition. “DD is clearly one of those phases that we recognize among patients with diabetes.”

Endocrinologists encourage clinicians to use online resources such as the Diabetes Distress Assessment and Resource Center to find validated tools and scales to measure the effects of DD. The tools require only a few minutes to use in a clinical setting, Kreider says, and can be valuable in determining the causes of DD. Individual interventions help patients by identifying and encouraging discussion of factors that contribute to symptoms.

DD symptoms vary over time, says Allison Lewinski, PhD, a postdoctoral fellow at the Durham Center for Health Services Research in Primary Care and the Durham Veterans Affairs Medical Center. “The symptoms of DD may not be persistent but occur at different times in life,” says Lewinski, who researches innovations that improve chronic disease self-management. “Research shows that DD waxes and wanes, but we don’t yet have research that has examined these trends over the long term.”