The decision on whether to screen yourself or loved ones for Type 1 diabetes risk can be a very personal one. In the last episode of a three-part series, we're joined by Laura Smith PhD, CDCES and Holly O’Donnell, PhD as they discuss the psychosocial factors to consider when talking about T1D screening—including the reasons why a person may or may not want to be screened and how to talk to children and their families about what a potential diagnosis means for them.
The decision on whether to screen yourself or loved ones for Type 1 diabetes risk can be a very personal one. In the last episode of a three-part series, we're joined by Laura Smith PhD, CDCES and Holly O’Donnell, PhD as they discuss the psychosocial factors to consider when talking about T1D screening—including the reasons why a person may or may not want to be screened and how to talk to children and their families about what a potential diagnosis means for them.
Learn more about the Autoimmune Screening Study in Kids here: ASK Research Program / Autoimmunity Screening for Kids / Denver, CO (askhealth.org)
Learn more about the Environmental Determinants of Diabetes in the Young study here: The Environmental Determinants of Diabetes in the Young (TEDDY) Web Site (usf.edu)
Jodi Lavin-Tompkins
Hello and welcome to ADCES' podcast, “The Huddle: Conversations with the diabetes care team”. In each episode, we speak with guests from across the diabetes care space to bring you perspectives, issues, and updates that elevate your role, inform your practice, and ignite your passion. I'm Jodi Lavin-Tompkins, Director of Accreditation and Content Development at the Association of Diabetes Care and Education Specialists.
My guests today are Dr. Holly O'Donnell, a licensed clinical psychologist and assistant professor of pediatrics at the Barbara Davis Center, University of Colorado School of Medicine, and Dr. Laura Smith, a CDCES and pediatric psychologist and professor at Cincinnati Children's Hospital, University of Cincinnati. In this episode, we'll discuss some of the psychosocial factors to consider when talking about screening for type 1 diabetes.
Hi Holly and Laura, welcome to The Huddle.
Laura Smith
Hi Jodi.
Holly O’Donnell
Hi Jodi, thanks for having us today.
Jodi
Yeah, so before we get started, can each of you share what your experience and background is in the area of type 1 diabetes screening and addressing the psychological impacts on individuals and families?
Laura
Sure. So I have been working in diabetes for more than 10 years now. I've worked as a clinical psychologist providing care for patients with type 1. But I've also worked for a number of years on the TEDDY study, so the Environmental Determinants of Diabetes in the Young. And that is a study that focuses on screening for type 1 diabetes antibodies in kids who are at genetic risk for type 1 diabetes. So they're sort of tracking kids over time to see what environmental triggers may push them to develop type 1 diabetes in those at risk. So that's sort of where my experience came in terms of screening for type 1 diabetes. I also am a person living with diabetes and so I have some personal experience with screening for diabetes risk in my family.
Holly
I have a similar background to Laura in that I'm a clinical psychologist working with individuals with type 1 diabetes. And I've also had the opportunity to work with Laura on the study that she described. And currently I am the psychologist for the Autoimmune Screening in Kids or ASK study for short, which is screening children here in Colorado from the general population for islet autoantibodies, indicating increased risk for developing type 1 diabetes. And I currently have a grant that is examining the psychological impact of this ASK screening on children from the general population and was recently awarded a JDRF grant to develop an anxiety intervention for youth with islet autoantibodies and their caregivers who are really anxious about developing type 1 diabetes.
Jodi
Okay, well thank you. You obviously are both very qualified for this conversation that we're having. So Laura, can you tell our audience a bit about the background and history of type 1 diabetes screening? And I'm sure they'd love to hear how it's changed over time.
Laura
Well, originally, screening for islet autoantibodies to determine risk of type 1 diabetes began in research context only. And so we mentioned the TEDDY study that both Holly and I have worked on. There were some predecessor studies to TEDDY as well that were sort of doing the same thing, screening for eyelid autoantibodies and tracking the development of T1D over time and those at increased risk. And that's really where the majority of data on the psychological experience of families that have that increased risk where that comes from. And so over time, that has changed a little bit. These studies began several decades ago in some cases. More recently, there has been more of a push to screen in larger and in the general population and to screen in individuals who don't necessarily have a known genetic risk for type 1 diabetes. So a lot of the earlier studies focused on family members of those who have type 1 diabetes already. And again, more recently, like with the ASK study that Holly mentioned, we've been focusing more, there's been more of a push to look at the general population and screen in those individuals as well. And as you can imagine, in the general population for those that may not have experience with having a person in their family with type 1 diabetes, their reaction to screening and that process may be different.
Jodi
And can you say more about how it might be different?
Holly
Sure. In general, we've seen that individuals who screen positive for islet autoantibodies in the ASK study, which again is screening general population youth in Colorado, are responding to this information with higher anxiety than we saw in the TEDDY study. And we can only speculate on the reasons for that at this point, but one potential explanation is that in the TEDDY study, those kids were enrolled at birth due to an increased genetic risk. And so they knew from the beginning their trial was at increased genetic risk. And therefore, when they developed islet autoantibodies, it may have come as kind of less of a surprise to them because they were warned about this. And also because they had been in that study, the TEDDY study since birth, they had a strong relationship with their TEDDY study nurses and other team members where they could turn to for support and advice when they learned about the antibody results. In contrast, when we screen individuals from the general population for islet autoantibodies, getting a positive result may come as a shock to them. They have less familiarity with type 1 diabetes, and they don't have that same established relationship with study team members that they can turn to kind of for support and additional education and guidance.
Jodi
Okay, thanks for explaining that. You know, in my experience, some people want to know what might be coming their way as a health problem, but others really don't want to know because it would cause them too much stress. And I know there's been some research on the impact of this screening. So Holly, can you summarize some key points of what those studies are saying?
Holly
Sure, Jodi. You're certainly right in that some people are information seekers and really like to know what is coming their way and so, you know, being told that their child will likely develop diabetes, they like to know that in advance and other people kind of like to avoid that information and approach it more as a, I'll deal with it when it comes type of situation. From the studies, we know that the most common reaction, the most common at least psychological reaction to learning that you or a loved one or at risk for developing type 1 diabetes is perhaps not surprisingly anxiety. And the anxiety is specific about one's risk for developing diabetes. So we do not see increased rates of anxiety disorders, but we see high rates of what we call state anxiety, meaning anxiety specifically about the risk for diabetes. And this anxiety often will decrease over time, but it can remain high in certain groups, such as parents of children with multiple islet autoantibodies who are at the highest risk for developing type 1 diabetes. And from our previous research, we know that in addition to those who have multiple islet autoantibodies, there are a couple other risk factors for why someone might have high anxiety. And we've seen that parents with less formalized education and also those who identify as racial and ethnic minorities tend to have higher state anxiety about their child developing type 1 diabetes. And, you know, back to your point about some people want to know about what's coming their way while others may avoid. What's interesting is that about two-thirds of people who have been approached to do studies such as ASK or TEDDY, have actually not gone forward and enrolled in those studies. And so, you know, the data from those who decline those studies is certainly limited, and we probably need more research to better understand people's decision making around this, but certainly not wanting to know may be a potential factor affecting those that decline to screen their child.
Laura
So Holly did a really nice job summarizing some of the really complicated things that we have learned and that we know about people respond to learning that their child is at increased risk. And I just wanted to point out that another thing that we've seen through research studies is that families often engage in behavior change after they learn their child is at an increased risk for type 1. So they may make dietary changes in the hopes of preventing or delaying type 1 diabetes. And we also know that many of them monitor their children for diabetes, either with their health care professional through the research study that they may already be enrolled in like TEDDY, or by doing things like glucose testing if they have access to that.
Jodi
Yeah, it does make sense to me that for some families, especially knowing that they are at higher risk, they would have more anxiety. So as psychologists, how do you suggest we help them with that?
Laura
Jodi, that's a great question. So I think the first step in being able to help individuals if they have anxiety about increased type 1 diabetes risk is knowing that they have anxiety about it. So I think the first point, which maybe is an obvious one, but it's one that I think sometimes we forget, is that you have to ask if a person is feeling stressed or anxious, or just generally how they're doing is they do learn if they're a child or that they themselves are at an increased risk for type 1 diabetes. So asking about it is first step and very important. And an additional piece of that is that we also want to make sure that health care providers or diabetes care and education specialists are asking about this on multiple occasions. So sometimes people's reactions to things change over time. So asking at the time of learning that a person is at an increased risk is important, but you may also want to check in at subsequent visits and ask if anything has changed in that area. If a child or a person is expressing that they are anxious and stressed about the results, I think it is really important to find good referral sources in your area where they can work with a mental health professional to work through that anxiety or whatever other reaction they're struggling with in relation to the news of the increased diabetes risk.
And ideally, it would be lovely if folks have access to mental health specialists who also know about type 1 diabetes. However, those are few and far between. And even though both Holly and I are on the podcast today, there aren’t a ton of psychologists or mental health professionals out there that focus in this area. So admittedly, that can be hard to find. But I think when that does exist, it can be quite helpful for families to connect with specialists in the area.
Jodi
Yeah. So maybe an idea would be when they're calling to make an appointment just to ask about that if they have experience working with people with type 1 diabetes.
Laura
Yes. I think that would be definitely a great question to ask. I think even more broadly, asking for someone who has expertise in the area of health psychology. So that's sort of a broad area for psychologists to focus on the sort of intersection between mental health and physical health conditions.
Jodi
Hmm, that's interesting. I didn't know there was such a specific thing in that field. All right, so thanks for sharing that. I imagine that working with children and families is a very different dynamic from working with adults. Do you involve the child in the decision making and what do you think the best way to do that is, Laura?
Laura
So it is actually very important to involve children in the decision to screen for islet antibodies or not. Now certainly adults or parents are the ones who consent to the screening, but it's important that children are informed and that they have a understanding of what the screening entails, what it means, and that they are providing a sense or agreement to participate in the screening itself. And that can be hard to do because the risk that's conferred by islet antibodies is sometimes difficult to explain. And so it's important to make sure that as much as possible, we use age -appropriate language when we're talking about these concepts to children. And again, make sure that they are given the space and the time to ask questions. And it's important to check in with them regularly during the process of talking about what screening entails and what it means so that we sort of assess their understanding and to the best that we can to make sure they know what they're getting into when it comes to screening. And then after a child has been screened, it's also important to make sure that not only are we asking them, asking the parent how they're dealing with that news or those results, but also to ask the child. And sometimes for children, their response to screening results or to information in general may change over time. So they may initially have a subdued reaction to that news, and then they have more questions and more emotions about it later. So again, important to assess that over time.
Jodi
And Holly, is there anything you would like to add to that?
Holly
Well, I think Laura did a great job covering that question. And while she was giving her response, it made me think about a patient I've worked with who had multiple islet autoantibodies and was at very high risk for developing type 1 diabetes. And what was interesting is that I asked him to tell me, “well, what are you most worried about?” And I kind of thought he would say needles or finger pokes, having to wear a device on his body. And what was really interesting is that his response to me was not being able to eat burritos anymore. And so, you know, he was 11 at the time. And I think that just highlights the importance of not making assumptions and certainly asking kids what their biggest fears are, what their biggest worries are, so that we can appropriately address them.
Jodi
That's a great story. Thank you for sharing that. So Laura, to continue on this theme of communicating either with the person being screened and or their family, what education do you think they need to address potential fears and concerns?
Laura
So Jodi, I think that there are several areas that would be important to cover from an education perspective when you're talking to families about screening. So first, it's really important that they have a basic understanding about type 1 diabetes and that you address any misconceptions around type 1 diabetes. In particular, it's quite common, as many of you likely know, for individuals to sort of confuse aspects of type 1 diabetes with type 2 diabetes, so making sure that families understand the difference and what type 1 diabetes looks like and what the treatment for it is. As Holly already mentioned, the risks and the benefits of screening are important to talk about and all of those steps in the screening process. In addition to that though, it is very important and at times very difficult to make sure that families understand what the autoantibody results mean and what risk that confers for type 1 diabetes. And what we've seen in studies like TEDDY is that families often misunderstand the increased risk that goes along with antibody positive result and that it's important to repeat that information often and to do a lot of educating and talking through what those results mean so that families to the best of our ability understand that risk and what it does and what it does not mean.
Jodi
Well, Laura, as far as understanding risk, you have type 1 diabetes yourself. You let our audience know. And I understand you may have personal experience related to this. Would you be willing to share that? I mean, sometimes hearing a real life story helps put all this in perspective.
Laura
Sure, Jodi, I'd be happy to share. Yes, I am. I'm a person living with type 1 diabetes for, I think, 24 years and counting now. I also have two children who are currently 10 and 12 who actually came along after I began working in the area of T1D screening. So when my kids were of the age where they could be screened, I really had to think through that decision about whether to screen them for the islet autoantibodies or whether or not to. And it was a decision I honestly really struggled with. And there were a few sort of for me key points that I considered in deciding whether I should screen or not. One of the factors that ended up impacting my decision to screen my children and that was ultimately my decision to screen them for islet autoantibodies was that I was aware of because of my work in the field, I was aware of the ability to enroll in research studies and pharmacological development in the area that could be accessed after screening if my kids had been positive for any of those islet auto antibodies.
I also think my other big concern in screening my children was anxiety or worries that might arise based on the results. And so very much like we were talking about today, I wondered about how I would manage that news or how my children would manage that news or whether news about auto antibody status would impact our day-to-day life decisions or behaviors that we might engage in. And I think ultimately for me, I decided that since I work in the area and help folks see all this psychological impacts of diabetes as a whole on a daily basis, that I decided we could work through those challenges if they came up. But I do think that what my struggle with deciding whether or not to screen my own kids really highlights is that it's a very complicated issue. And from a health provider perspective, I think it's really important to give families or individuals the time and the space to make that decision and to make the decision that best fits for them because it's not an easy one.
Jodi
Wow. That story really brings it to life for me. Thank you so much for sharing. I mean, you had to work through all the things you've been talking about so far in the podcast. I have a story too. I went through something as well, although quite different from your story. And mine is that I do have a brother who developed LADA (Latent Autoimmune Diabetes) and essentially has type 1 diabetes. And his daughter was diagnosed with type 1 even before he was. She was age 21. And, you know, my father has insulin requiring diabetes that was treated like type 2 for many, many years, although he's always been rather skinny and had no family history. So I always wonder now that I know about this. I wish we had gotten him screened for antibodies. We never did. I think it might have been helpful for our family, but we didn't really know about it at the time. So that just goes to show that this increased push for screening may be helpful for a lot of people that wouldn't have accessed it before.
Well, Holly and Laura, thank you so much for taking the time to join us for this episode of The Huddle and for sharing your knowledge and experience.
Laura
Thanks for having us, Jodi.
Holly
Yeah, thanks, Jodi.
Jodi
Yes, it's been great hosting you, and I want to thank the audience for listening to this week's episode of The Huddle. Make sure to download the resources discussed in today's episode. You can find them linked in the show notes. And remember, ADCES membership gets you free access to resources, education, and networking that improve your practice and optimize outcomes for your clients. Learn more about what ADCES can do for you at adces.org/join.
The information in this podcast is for informational purposes only and may not be appropriate or applicable to your individual circumstances. This podcast does not provide medical or professional advice and is not a substitute for consultation with a healthcare professional. Please consult your healthcare professional for any medical questions.