Managing Diabetes Distress in Primary Care: Doing It Better

Jay H. Shubrook, DO; William H. Polonsky, PhD

Disclosures

January 28, 2019

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

Today I'm delighted to have Dr William Polonsky back with us today to talk about diabetes distress. Dr Polonsky is a PhD, a Certified Diabetes Educator, and the president of the Behavioral Diabetes Institute in Southern California. Welcome back, Dr Polonsky.

William H. Polonsky, PhD: Thank you. Glad to be here.

Shubrook: Earlier, we talked about diabetes distress, which is common and affects people with both type 1 and type 2 diabetes. It affects the ongoing management and progression of the disease because it gets in the way of self-care.

It is a topic that is important for primary care providers to understand.

I'm going to share a patient of mine. This is a 54-year-old man who was diagnosed with type 2 diabetes about 6 months ago, based on screening labs. Almost immediately upon diagnosis, he engaged in action mode. He is a civil engineer, so he developed tables and plans.

When I saw him recently, he told me that he gets up at 5:00 in the morning and starts his to-do list for his diabetes self-care. He is trying to do everything every day. His self-care is taking over his day. I'm amazed that he's doing it all, but he is not sure how much longer he can keep this up. In fact, he's starting to ask me questions about whether he is going to be able to take care of his family and how soon it will be before he develops complications. I see him burning out.

Is this diabetes distress or a component of it? How do I address this?

Polonsky: I think he would probably score pretty high on our Diabetes Distress Scale (DDS); if not now, he is on the way. We don't actually tend to see a lot of elevated diabetes stress in really newly diagnosed patients, but we do as things progress. You can even see it over the course of 40, 50, or 60 years of living with diabetes.

You point to things that are important, and one is probably the thing that most distresses folks with diabetes. The highest-scoring item on our scale is this sense of hopelessness—that "this disease is going to get me no matter what I do." Despite all of the scrambling and work your patient is doing, he has the sense that he is doomed and that it is a death sentence.

It is important that a patient understand that, in fact, the real 21st century news is that with good care and effort, the odds are pretty good you're going to live a long and healthy life with diabetes.

Diabetes distress is about feeling powerless in the face of diabetes—that "my efforts don't matter, this disease is going to get me, and my blood sugars are going to go crazy no matter what I do." It's that element of powerlessness that is the core.

Your patient sounds like he's gone off the deep end with an almost obsessive approach towards diabetes. It is tough dealing with a relatively invisible disease like type 2 diabetes. We try to find ways to show our patients that even small self-care efforts can make a difference. Those small efforts accumulate over time and help one to be quite successful with diabetes. You don't have to do everything to be successful. "Perfect" self-care doesn't need to be the goal at all. That's really the key to help people be successful and not feel so overwhelmed and, as you said, burned out by their diabetes, where they just give up completely.

Shubrook: Yes. That's the sense I have. This patient may be overengaged. How do I balance that recognition of his work—of course, he is doing the work—and actually help him move forward? I feel like I need to do this in a thoughtful way that doesn't undermine his efforts.

Polonsky: Yes. I once had a support group for people with type 1 diabetes, and by profession they were literally all rocket scientists. They were the most stressed-out group of people I had ever met. They were convinced that because they had all of the algorithms and the knowledge, everything should work perfectly.

They couldn't believe that despite their best efforts, the current technology doesn't allow us to imitate a pancreas perfectly. The odds are pretty good that they're going to have often unexplainable fluctuations in their blood glucose levels, for example, no matter what they do—something you and I know but which is still hard for patients to grasp at times.

The first step with someone like this, of course, is to set expectations. What glycemic goals are reasonable? What are the goals that we can have for you that you can achieve and that can help you be successful? Having perfect blood sugars is not only unnecessary, it's not going to be possible for you.

Oftentimes, we share a lot of data about what we know are the most important steps to be successful and to live well without microvascular and macrovascular complications. It can be a huge relief once people—especially people like the guy you described—get the real information and evidence about what needs to be done.

Shubrook: I think that is important. Diabetes is an imperfect disease. These numbers are all suggestions. They're all ranges. Of course, there are factors that we control and ones that we don't control that contribute to them.

I heard you say, too, that it's not just about the numbers. We may be numbers-focused, but this guy is worried about his longevity and his ability to care for himself and his family. Those numbers aren't directly related to that, per se.

Polonsky: Yes. I would say that they are related to some degree, but there are other things that are going on that are important for this guy. Yes, the sense of mortality that can accompany a diagnosis like diabetes can just be shattering for folks.

But we know so much more now. With good care and effort, odds are good that you can live a long, healthy life with diabetes. Yet we don't tend to share that with patients. What patients hear is all of the scary stuff. They hear things like, diabetes is the leading cause of blindness or the leading cause of amputations, which we would argue is not true. It's out-of-control diabetes that's the leading cause of these problems. As I have said probably too many times, well-controlled diabetes is the leading cause of nothing. Well-controlled doesn't mean perfect blood glucose control or metabolic control—it means pretty good control.

Shubrook: I think that's important. I love your comment that even a rocket scientist will struggle with the perfection of diabetes, if that's the goal.

Polonsky: Probably more so, yes.

Shubrook: For this guy, what do you think I should address first? Is it the expectation? Is it the time? I want to be able to give him an actionable item. I don't know how he will respond, so I think I have to start with something and then see how he responds.

Polonsky: Yes. If he were sitting in front of me, I would do a couple of things. Number one, I'd say "First of all, here's the good news: The odds are pretty good that, with decent care and control, you're going to live as long and healthy a life as anybody else, with the caveats that we all have—you should probably wear a seatbelt in your car and stop smoking."

We know what it takes to achieve that or what makes it most likely. We need to set some cardiometabolic goals, such as an A1c under 7.0%, blood pressure targets, lipids, etc. It may not help you much more to get lower than those numbers. Let's make sure we have those goals and that they are achievable for you.

Let's use what I like to call the "bang for your buck" approach. If you know anything about diabetes education, you've probably been told 150 things you should be doing to take better care of your health. It's impossible. It's too much and, in truth, these 150 things are not equally important. Let's talk about the few things that are going to be the most powerful, with the least effort, to help you be successful.

For most people, number one or two is going to be whether you are on the right medication and whether you are taking it—in other words, the few actionable things that people can do without giving them a list of 150 is a place to start. This is actually a relief for so many people.

Shubrook: I love the simplicity of that and the return on investment. For this patient, I think it would be important to ask, "What are the things I can count on getting the most benefit from?"

Polonsky: Exactly.

Shubrook: This is a very illustrative case and I appreciate your approach. As a primary care physician who treats patients with diabetes regularly, I'm learning that I need to (1) look for diabetes distress; (2) make sure that I engage my patient in recognizing the work that they're doing and the impact it has on them; and (3) be a team member to support them so that they don't have unrealistic expectations and they don't get overwhelmed by something that is already very overwhelming. Your points are very well appreciated.

Polonsky: [I would like to] highlight one thing that you've said, which I think is so important. It's [the importance of] considering what our patients are going through. If they're not following our instructions all the time, it's not because they're bad, stupid, in denial, or "noncompliant." What they're going through makes sense. It's reasonable and rational for anyone to experience this, given the nature of this disease.

What we're talking about, and what you just summarized so well, is a way to treat our patients respectfully, as we would like to be treated ourselves, and the interventions that can really make a difference. Thank you for doing that.

Shubrook: Thank you for your expertise, your contributions for diabetes distress, and helping us help our patients.

Polonsky: Thank you.

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