What Is Diabetes Distress?

Jay H. Shubrook, DO: Welcome to Everyday Diabetes: Practical Pointers for Primary Care. I am Jay Shubrook, a family physician and diabetologist at Touro University, California.

Today I have William Polonsky, PhD, a certified diabetes educator and president of the Behavioral Diabetes Institute in San Diego, California. Thanks for joining us today, Dr Polonsky.

William H. Polonsky, PhD: My pleasure. Thanks.

Shubrook: There is a lot to managing diabetes. Certainly, in primary care, we know about the important role of mental health issues in the management of diabetes. We also know some of the barriers to management of diabetes—quite honestly, any chronic disease—that those with mental health issues must address. Now there is a new term: diabetes distress. Could you tell me a little bit about diabetes distress? What is different about diabetes distress?

Polonsky: We've been doing research on diabetes distress for several decades now. It refers to the hidden aggravations, stresses, and burdens that come with managing a tough disease like diabetes. It is about all the frustrations, fears, and discouragement that people go through on a daily basis. And we know that those can really get in the way and make it tough for people to engage with their diabetes in a way that can help them be successful.

Shubrook: So diabetes distress is the burden of the disease that contributes to difficulties in management of the disease?

Polonsky: Yes, as well as the way people deal with the burden of the disease. On the day you develop diabetes, the universe gives you a new job to do. It is a job with no vacations, no pay, and it requires a fair amount of effort. This effort can also be linked to frustrations with how difficult it can be to be successful. The aggravations can be interpersonal as well, as a result of the shame and guilt that are especially associated with type 2 diabetes. There are so many different emotional and behavioral aspects that just can bring you down and lead to becoming discouraged and even disengaged from your own healthcare.

Shubrook: Does diabetes distress affect patient outcomes and management skills?

Polonsky: The evidence is pretty good that it does. In fact, in contrast to other issues that we typically think of, like depression, people who are struggling with elevated levels of diabetes distress over time clearly do more poorly in terms of glycemic outcomes, including A1c, time in [desired blood glucose] range, and more.

Identifying Patients With Diabetes Distress

Shubrook: How do I identify when my patient has diabetes distress?

Polonsky: There are fancy ways and less fancy ways. We have developed questionnaires that we have used and validated over the course of time, now being used in many translations all over the world. Probably the two most well known include the Diabetes Distress Scale (DDS), which we developed back in 2005, and an older version called the Problems Areas in Diabetes Questionnaire (PAID), which we developed in the mid-1990s. They are both pretty brief and take a few minutes for people to fill out—often, even in the waiting room. We now have an online version of the DDS that is easy to fill out very quickly on your phone and to score automatically. These results can become a conversation-starter for people with diabetes and their healthcare providers. These 17 to 20 items (17 for the DDS, 20 for the PAID) help patients to answer the question, "Which of these do you see as problems for you?" It becomes a way of quickly identifying the toughest issues and how we might be able to address them to help people be more successful.

I will note that in many settings and for many clinicians, even these short scales can feel a bit burdensome—17 or 20 items; things I have to look at; I don't know if I have time. I always like to say to my busy healthcare provider colleagues, "If you do not have the time to use one of these scales, then at least ask your patients this one question: 'Mrs Smith, it's nice to see you. Can you tell me one thing about diabetes that is driving you crazy?'" You can make that the beginning of at least a brief conversation that can help you zero in on what really needs to be addressed to help this person be successful.

Shubrook: I love that—really recognizing the personal burden of this chronic disease, how it affects the day-to-day management, and the way someone copes with the disease.

Polonsky: Also, I think it honors our patients when we bother to ask that question, to be able to say that we actually care enough to even know what is driving them crazy. I don't know how often you try this, but having recommended this and used this with all of our patients for many decades, I have still never met a single person who has ever said, "I cannot really think of anything." It really zooms in on what is important.

Shubrook: How often should I expect to see diabetes distress in my patients?

Polonsky: That is a really good question. We know from all of the studies that we have conducted to date that an elevated score on the DDS, indicating at least moderate levels of diabetes distress, is typically reported in about 35% or more of people, in both type 1 and type 2 diabetes. The good news is that it is not everybody. Again, it is about one third or more of our patients.

Shubrook: If I wanted to move beyond that single question, how will I get access to those questionnaires?

Polonsky: The easiest way is probably just to go to our website, which is behavioraldiabetes.org. There is a "scales and measures" tab that allows one to see and download all versions and various translations, in addition to all of the key published articles about the tool.

The cooler way is to go to diabetesdistress.org on your phone, and the questionnaire will pop up. It is easy to fill out—I often hand it to my patients and ask them to complete it. It is scored automatically and it gives you a lot of tips on what to do with it. That is by far the easiest way.

Shubrook: Thank you so much. What I heard today, Dr Polonsky, is that first, about one third of my patients will be experiencing diabetes distress. If I do not help them deal with this, it is going to affect their management and potentially their progression. And second, it could be as simple as just opening the conversation by asking, "What drives you crazy about your diabetes management?"

Polonsky: Exactly.

Shubrook: Thank you so much for joining us today. We will talk more about this important topic.

Polonsky: My pleasure. Thank you.

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