Study of youths with diabetes shows poor adherence

Host Amber Smith: Upstate Medical University in Syracuse, New York, invites you to be The Informed Patient, with the podcast that features experts from Central New York's only academic medical center. I'm your host, Amber Smith.

Young adults with Type 2 diabetes don't take their hypertension and cholesterol medicine as they should. This may explain earlier research showing early onset of serious health problems for this patient population and worsening medical conditions as these people age.

With me to talk about their medication adherence study are Dr. Ruth Weinstock, who is medical director of the Clinical Research Unit and the Joslin Diabetes Center at Upstate, and Dr. Paula Trief, a professor of psychiatry and medicine at Upstate. Both are SUNY distinguished service professors.

Welcome back to "The Informed Patient," both of you.

Ruth Weinstock, MD, PhD: Thank you so much.

Paula Trief, PhD: Thank you for your interest.

Host Amber Smith: Your study that was published recently in the Journal of the American Medical Association Network is called "Anti-Hypertensive and Lipid-Lowering Medication Adherence in Young Adults with Youth-Onset Type 2 Diabetes." Can you tell us how many people are included in this study, what the age range is, and were they all from Central New York?

Paula Trief, PhD: So you have to understand the context of this. This was a study that was kind of an offshoot of the TODAY study (Treatment Options for Type 2 Diabetes in Adolescents & Youth).

In the TODAY study, about 700 youths, kids and adolescents, were enrolled. And that was at 15 centers across the United States, so no, it wasn't just Central New York. And they all had Type 2 diabetes. They had developed it as children, as teenagers. And the purpose of TODAY was to test three interventions to see which work best to control their blood sugar. After TODAY, a group of them were followed annually, so there was no more intervention, but they were assessed regularly to see how things progressed. And that was called TODAY2.

And our study, we called it the iCount study, assessed them towards the end of TODAY2, so at that point, they were young adults. I think the mean age was 26 years old. In this particular paper, we looked at 196 of them who had hypertension (high blood pressure) or nephropathy, which is kidney disease, and then 146 who had dyslipidemia, which is high cholesterol.

Host Amber Smith: And what did you find in those with either hypertension or high cholesterol?

Ruth Weinstock, MD, PhD: Well, the findings were sad. What we found is that if we define low adherence to taking medications as taking less than 80% of the amount of the pill that was prescribed, 80% were low adherent who had hypertension or high blood pressure, and two-thirds weren't taking any medication at all for those conditions.

In terms of the high cholesterol, 94%, so most of them, were low adherent and 84% were not taking any cholesterol-lowering medication at all, even though statin therapy is what has been recommended, and had been recommended, earlier during the TODAY trial.

Host Amber Smith: How does that compare with previous studies that you've looked at for adherence for oral diabetes medicines?

Paula Trief, PhD: That was also poor. It was a little bit better, but not much. The results were really similar. We found that 65.4% were low adherent to their oral medications, again, taking less than 80% of their prescribed pills, and 36.3% were low adherent to insulin.

Now the insulin was just by self-report, so that's probably an underestimation, we would say.

Host Amber Smith: Now why is not taking blood pressure medicine or cholesterol medicine risky, particularly for people with Type 2 diabetes? Dr. Weinstock?

Ruth Weinstock, MD, PhD: For people with Type 2 diabetes, the largest cause of morbidity and mortality -- actually, of death -- is heart disease and stroke.

And we know that to prevent heart disease and stroke that it's important to keep the blood sugars as best under control as one can, but also extremely important is to treat high blood pressure and to treat high cholesterol levels with drugs called statins. That is well known, and so by them not taking the simple medication -- pills -- to lower blood pressure and a statin drug, which is a pill, to lower their cholesterol level, they're greatly increasing their risk of heart disease and stroke.

Diabetes is a large risk factor for heart disease and stroke, but we know that people with diabetes with hypertension and high cholesterol levels are at even higher risk.

In addition, there are other complications of diabetes, for example, kidney disease, and we know that this population is developing early kidney disease, and having untreated high blood pressure in addition to diabetes also increases the progression and increases the risk of having kidney disease.

Host Amber Smith: I think of kidney failure and cardiovascular disease and stroke as diseases of older people. How young are you seeing these diseases in people?

Ruth Weinstock, MD, PhD: So we found in the TODAY study, which of course is also very sad, that in their teens, many of them were developing high blood pressure, as well as early evidence that their kidneys were being affected by the diabetes.

This is alarming, really. We have some individuals, actually, from this study who are now on dialysis in their 20s, so they are developing it early, and by not treating the high blood pressure and the high cholesterol levels, they're increasing the risk of a more rapid progression of kidney failure, eye problems related to diabetes, as well as heart disease and stroke.

Host Amber Smith: And it sounds like this goes back to if they took the medication to manage these conditions, the high blood pressure or the high cholesterol, they wouldn't be in that situation.

Ruth Weinstock, MD, PhD: That's what we believe. So many of them didn't take the medication. There were very few who were taking it.

So in this particular population, we weren't able to make that comparison. But certainly based on all the studies in adults, that is the case, that people who take the statin drugs and control their blood pressure have much better outcomes.

Host Amber Smith: This is Upstate's "The Informed Patient" podcast. I'm your host, Amber Smith.

I'm talking to Dr. Ruth Weinstock and Dr. Paula Trief about their research, which was paid for by the National Institutes of Health and was published recently in the Journal of the American Medical Association Network.

Now, do you know the reasons that young adults are not adherent?

Paula Trief, PhD: Well, that was kind of the focus of this study. What we wanted to look at was, what are some of the psychological and some of the social factors that might affect medication adherence?

I have to say that it's not just young adults who are not really that adherent. I mean, the (medical) literature suggests that, of people who get prescriptions for medications, 50% of them actually fill the prescriptions, and of those, 50% actually take them as prescribed.

So the medication adherence is a huge concern that's kind of, we think, understudied. But in this particular case, we were looking at what factors affected it in these young adults with youth-onset Type 2 diabetes.

And the one thing that came across loud and clear was that the beliefs that they have about medicines are important. We found that if they had concerns about medicines, concerns like becoming dependent, thinking of a medicine that you have to take over a prolonged period of time as meaning you're dependent on it, or being concerned about side effects. That predicted low adherence over time, meaning if you had these kinds of beliefs at one point, a year later, you were still likely to be low adherent to oral medications.

And also, unmet social and material needs; so that's things like housing insecurity and medication, health care coverage, not having health care coverage. Those are considered unmet material needs that also predicted low adherence to oral medications. Similarly, believing that medicines are harmful. This is a general belief, that medicines in general are harmful, or medicines in general are overused, that predicted low adherence to insulin.

Those kinds of thoughts and cognitions, we would call it, are predictive of poor adherence. And it was also interesting what we did not find. So we did not find that being depressed predicted low adherence or anxiety or having low self-efficacy or confidence in your ability to do what you need to do. They did not predict low adherence in this population. And there's an assumption always that if someone's depressed, if you then treat their depression, they'll do better with their adherence. And that may be true, but so far there's really no strong evidence for that.

Host Amber Smith: And these medications that we're talking about, are they generally covered by health insurance plans, or was there sort of a fear of not being able to afford it?

Ruth Weinstock, MD, PhD: These are extremely inexpensive medications. Very inexpensive. They're generic, and you can get them at certain pharmacies for $10 or $12 for a three-month supply, so the cost is not a barrier for these medications. And the insurances do cover it, but even without insurance, they're inexpensive.

Host Amber Smith: Did you get a sense of whether the people in your study have a lack of understanding about what might happen if they don't take the medicines? Is there, like, an education gap?

Paula Trief, PhD: We really can't answer that, but I would have to say that in this group, in particular, they had had a lot of education about the importance of taking them regularly when they were involved in the TODAY study, which was the intervention trial. And then also, they would be coming back on a regular basis for these assessments and meeting with the staff people, who provided a lot of support. And I'm sure we'll be talking to them about medication. So if there is a knowledge gap, this particular group would be the least likely to have had that.

The problem with the understanding about how bad things can be if you don't take your medicines is that if you emphasize potential bad things that can happen, you raise anxiety and fear. And fear, honestly, is just not generally a good motivator. It often leads people to just avoid dealing with the issue at all. If I look at my pills, and it makes me anxious, I don't remember if I've taken them or what they're going to do to me if I don't take them. People just kind of push them aside.

So that's something that just, in general, I don't think our field has figured out really well, to be honest.

Host Amber Smith: Have you tossed around ideas for ways to help this group of patients?

Paula Trief, PhD: Yeah, of course. So the focus here was, again, to figure out what might be underlying some of it. Most interventions that have been done on medication adherence work on ways to remind people, because people say, "Oh, I forgot."

So we figure, OK, well then, we'll remind you. And so there are those things like setting schedules. There's a lot of new apps that people can use that can remind them when they're supposed to take their medications. But right now there's really no evidence that just reminding people works or even that forgetting is the main issue, despite the fact that that's what patients often say.

So, based on our data, we think one thing is that it's important for providers first to focus on medication adherence when they meet with a patient. Because sometimes, if a patient's not doing well, if their numbers don't look good, then providers just will increase their medications or switch the medications and maybe not have the time to explore with them: Are they actually even taking them, or are they taking them properly?

So one is just to focus on medication adherence, and then the other is to try to address this issue about beliefs about medicines. Again, all this takes time, and providers are so stressed for time, it's difficult, but it means saying something to them like: So, here, I'm going to give you the script for medicines. What are your thoughts about this? What are your thoughts about the medicines that you've been taking? How have you been doing? Let's spend a little time talking about it.

And so if you can find out that your patient has fears that drugs are overused, or that they're going to be harmful to them, or that they're going to be dependent, at least they can start to address those through this kind of conversation.

Host Amber Smith: Are there suggestions for how friends or family members can intervene to help these young adults?

Paula Trief, PhD: I think it's the same thing. I think it's to pay attention to medication adherence and to ask about how it's going, not in a shaming way, and not in a way that, again, as I said, just makes people anxious and fearful. And family members are often also anxious and fearful. But accept that most patients, not just these young adults, don't take their meds as prescribed. And it's not just for them, as I said.

So, spending some time talking to them about it and then asking how they can help. Say: OK, is there anything I can do to help you stay on track with this? Because I love you and because I'm worried about you, and I want to be an aide and a collaborator with you in this process.

Host Amber Smith: We've talked before about the obesity epidemic fueling the increase in the number of people developing Type 2 diabetes as children. Do either of you see that changing in the near future?

Ruth Weinstock, MD, PhD: Well, unfortunately there's no evidence that it's changed yet, although we can always be hopeful for the future. There are new anti-obesity medications that are being used in adults, and now some of them are approved for children. But we have not seen yet that that trend has changed.

But we're hopeful. We're always hopeful that there'll be new treatments and new, other, prevention efforts that can change this trajectory. But there may also be other environmental influences, as well as genetic influences, that are responsible for some of this. And one needs to keep in mind that not just Type 2 diabetes, but Type 1 diabetes also, which is not associated with obesity, is also increasing in incidence and prevalence, in the U.S. and other parts of the world. So there's a lot to research; it's a lot that we still don't understand. But unfortunately, at the moment, the incidence and prevalence of diabetes just continues to increase worldwide.

And the other thing to keep in mind is that both Type 1 and Type 2 diabetes, but we'll talk specifically about Type 2, is very heterogeneous. We talk about Type two diabetes as if it's one disease, but it's really not. The more we learn about it, the more we're going to find that within Type 2 diabetes, we're going to have new names and maybe a dozen or more types of diabetes as we learn more about the genetics, as we learn more about the differences.

Some people with Type 2 diabetes are not obese. There are probably many different types of Type 2 diabetes, which in the future will probably have different names. as we learn more about them. And as we learn more about them, hopefully, better ways to prevent and treat all the different people with diabetes.

Host Amber Smith: Dr. Trief?

Paula Trief, PhD: I think everybody is very optimistic, or let's say positive, about these new anti-obesity drugs. I'm always a little wary about anything new, so I guess we'll see. That may help a segment of the population, but even with that, you have to give yourself a shot. There's going to be adherence questions there as well, I'm sure.

Ruth Weinstock, MD, PhD: Yeah. I think the other concern is that this study that we're talking about -- this was Type 2 diabetes that developed in childhood, not in adults. And so they're still growing, the teenagers. And so, the new obesity drugs, whereas they are very helpful to certain people to lose weight, you have to continue to take them. There's weight regain when you stop taking them. So what are the possible long-term side effects when you're talking about starting drugs like this in a child, in someone who's still growing or someone who has not had her children yet? So I think there are a lot of unanswered questions as well.

Host Amber Smith: Well, I appreciate both of you for making time for this interview. Thank you.

Ruth Weinstock, MD, PhD: Thank you so much.

Paula Trief, PhD: Thank you for your interest.

Host Amber Smith: My guests have been Dr. Ruth Weinstock, the medical director of the Clinical Research Unit and the Joslin Diabetes Center at Upstate, and Dr. Paula Trief, a professor of psychiatry and medicine at Upstate.

"The Informed Patient" is a podcast covering health, science and medicine, brought to you by Upstate Medical University in Syracuse, New York, and produced by Jim Howe.

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