Diabetes Distress: A Common, Under-Treated Emotional State

This often unrecognized response arises when individuals are overwhelmed when facing the responsibility of managing a chronic life-long disease. Thus, regular screening should become a routine aspect of diabetes patient care.

with Lawrence Fisher, PhD, and Kathryn Evans Kreider, DNP

Just about everyone diagnosed with a chronic illness is likely to have some psychological response, be it anxiety, depression, or anger. For patients diagnosed with diabetes, there is the possibility of developing a response that is not psychologically based, but rather an understandable emotional reaction to the disease and all that its management entails.1

You might expect upwards of half of those with diabetes to experience a response called, diabetes distress,2 which is associated with the ongoing pressures and demands of managing the disease. Failure to recognize diabetes distress will perpetuate poor patient self-management of blood sugar levels, in general as well as worse overall outcomes.3

Diabetes distress can prevent a patient from good self-care.

Address the Emotional Burden of Managing Diabetes

The psychological stress that comes with chronic diseases is well documented. For example, women with breast cancer have developed a clinical distress that does not meet the diagnosis of a typical depressive disorder, says Lawrence Fisher, PhD, a professor of family and community medicine at the University of California at San Francisco, who has become an authority on this condition.

There is an entire journal, Psycho-Oncology, devoted to research on the behavioral, psychological, and social impacts of living with cancer. However, the emotional toll of chronic conditions such as diabetes have only been known and studied for about a decade, and many healthcare providers remain unaware of the full extent of its impact on patients. Even more important is the need for you and your staff to be sufficiently prepared to recognize and assist patients through diabetes distress.

“I did a Grand Rounds presentation on diabetes distress last year, and a large majority of the physicians in audience had never heard of it,” said Kathryn Evans Kreider, DNP, FNP-BC, BC-ADM, a family nurse practitioner in endocrinology, and associate professor, at Duke University School of Nursing in Durham, North Carolina.

“We know that it is a huge burden for patients to manage diabetes appropriately and productively,” Dr. Fisher told EndocrineWeb, “and because it is a progressive disease, there is often a fear of what the future holds. Currently, there are also an increasing concern about access to healthcare and the cost of medications, particularly insulin. It’s not just the diagnosis; it is all of that together.”

Check In with Patients—Diabetes Distress May Arise At Any Time

As such, there is timely review of the development and management of diabetes distress that is being published in the Journal of Nurse Practitioners,1which outlines the condition, how to screen for it, and its impact on patients and patient care. In particular, Dr. Kreider indicated that many providers and patients are “naïve” to this consequence of diabetes, and that a diagnosis may leave patients and their families reeling.

“It is essential that clinicians appreciate that most patients likely will not meet the criteria for clinical depression or generalized anxiety, yet still experience significant psychological effects in trying to cope with and adjust to their diagnosis and face concerns with regard to ongoing treatment, reduced life expectancy, and the impact on their daily lives,” she said.

To assess a patient as having diabetes distress, there must be contributory factors,such as issues with:

  • Dietary planning
  • Blood glucose testing
  • Medication management
  • Relationships
  • Disease complications
  • Simply feeling overwhelmed

As well, there may be patients who are both struggling with both diabetes distress and experiencing clinical depression, said Dr. Kreider. “These are individuals who will likely require more intensive behavioral treatment but it still should include elements related to diabetes distress to be impactful.1

The type of diabetes won’t matter. Dr. Fisher and his colleagues conducted a study in which they found a modest difference in the number of patients with diabetes distress when evaluated by type of diabetes present.5 “The prevalence of diabetes distress in those with type 1 diabetes (T1D) was about 35%, and in type 2 diabetes (T2D), it was slightly higher at 43%,”  he said. “we found that the overall incidence is 55%; and, once it develops, it doesn’t disappear—it ebbs and flows but persists.”

With All Diabetes Patients—Time to Integrate Screening for Diabetes Distress

Both experts urge healthcare professionals to pay as much attention to the emotional side of diabetes management as they do to hemoglobin A1c levels and blood glucose numbers.

Dr. Fisher said: To engender successful long-term diabetes management, “it is so important to because how your patients feel will affect what they do. When they feel bummed out, powerless, or overwhelmed, they won’t be able to manage their diabetes in a constructive way. A patient may feel, for example, that no matter what she does, she’ll never get her blood sugar under control, and since her doctor never says, ‘great job’, why should she even bother?”

As such, screening for diabetes distress should be part of routine diabetes care for all patients, if it isn’t already, Dr. Krieder said. To facilitate this process, clinicians may choose to employ the abbreviated 2-question screening tool,7 developed by Dr. Fisher and colleagues, which was based on the original, comprehensive 17-question Diabetes Distress Scale,  that was adapted into two forms—for patients with type 1 diabetes and type 2 diabetes.8

However, what works for one patient may not work for many others, as we’ve seen, Dr. Fisher said. Some people, for example, may respond well to group appointments while others will not. And, those who have severe distress may need different interventions then those whose distress is milder, he said, so there is still much to learn about addressing diabetes distress.

Incorporate Psychological Distress Checks to Improve Outcomes

“In the last two trials,5,6 we were able to reduce the distress successfully in patients with type 1 diabetes and fairly quickly without a lot of financial or time inputs.” Now, Dr. Fisher and his team are investigating ways to prevent diabetes distress.

“What if we were to include something on distress in traditional diabetes programs?” he said. “By validating this as part of the condition—telling patients that distress is common so they might recognize it if and when it occurs—and letting them know that we can help, it will go along way toward alleviating unneeded discomfort. Similarly, what if we were to raise it during times when a new treatment is introduced such as when a patient is going to start taking insulin for the first time. Certainly, our patients would be helped if we could develop programs based on those challenging times.”

Psychotherapy and treatment with selective serotonin reuptake inhibitors are the gold standard when addressing clinical depression but do not work for diabetes distress, Dr. Kreider said. The best results in our patients have come from self-management education for diabetes. “A lot of the distress stems from a difficulty in coping and problem-solving with regard to this [chronic] disease; providing education directly addresses that lack of knowledge, lessing the distress.” she said.

Some studies have been positive, but have related to specific populations, such as adolescents, Latinx patients, or low-income patients. “But there haven’t been any large heterogenous population studies. We need to look at patient-centered approaches across diverse population,” said Dr. Krieder. "Studies aimed at identifying those most at risk for distress, across the trajectory of care—not just at diagnosis—would be most benefial."

It's All In the Timing—Check In When Diabetes Plan Changes 

This isn’t a comorbidity, Dr. Fisher said. It is part and parcel of the disease, so it must be treated as such by those who care for patients – whether an endocrinologist, a diabetes educator, or a primary care provider. “You can’t refer this out to a therapist. They usually don’t know anything about diabetes. But right now, even diabetes providers need more education and more training about this.”

The reasons that clinicians should be taking this seriously are clear, Dr. Kreider said: There are multiple studies linking diabetes distress to poor glycemic control, poor self-care behaviors, and poor quality of life. “We deal with this every day in clinic. When we have patients who are not responding to treatment, it should make us to wonder whether this may originate from a psychosocial issue or some other personal challenge.”

Dr. Fisher added that just because a patient seems to be managing the physical aspects of their disease does not mean they are dealing just as well with the psychological aspects of the disease. “Just because a patient has good biological indicators doesn’t mean you don’t need to screen for diabetes distress,” he said.

Easily implementable tools are available that require little time, Dr. Kreider said. “You can’t say you are too busy to do a two-item scale in your diabetes clinic or private practice.”

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