Youth with type 1 and type 2 diabetes face different challenges than adults. Jenise Wong, MD, PhD, pediatric endocrinologist, and associate professor of pediatrics at UCSF School of Medicine, talks about the unique needs for youth—including school-age children and teenagers—who have diabetes. She discusses how health care professionals can help youth access and use diabetes technology, manage barriers to care, and transition to independence.

Q: How are youth affected by type 1 and type 2 diabetes? Do youth with diabetes face different challenges than adults with diabetes?

A: From a physiologic perspective, youth are constantly growing and developing. These changes make diabetes—whether we’re talking about type 1 or type 2—more unpredictable for youth. Growth and development also have a huge impact on insulin needs and diabetes management. Insulin resistance typically increases with changes to hormones during puberty, causing insulin needs to increase dramatically. Developmentally, a young child will have to gradually transition from having caregivers manage their care to making independent decisions about insulin, food, and activity, as an adolescent and young adult.

In addition, the daily lives of children and adolescents often are not as scheduled as most adult lives. For example, youth are more likely to snack between meals and engage in spontaneous, unscheduled play and activities. The way we manage diabetes in youth needs to be more flexible to align with their changing lifestyles.

Q: What challenges do youth face in managing their diabetes in different settings, such as at school?

A: Youth need to have flexibility in managing their diabetes, and this can conflict with school rules. For example, maybe a school-age child with type 1 diabetes is in the middle of class and gets an alert on their phone, which is linked to their continuous glucose monitor (CGM), that their blood glucose is going high or low. They must pull out their phone, which is not typically allowed during class, and they may need a bolus of insulin if the glucose is high, or some fast-acting sugar if it is low. Now the student conflicts with school rules that prohibit phones and eating in class, but they need to take care of their blood glucose immediately.

The other thing that happens, especially for teenagers, is that they just want to fit in. They don’t want to stand out. That’s a normal feeling at this age. Now you layer on diabetes, which is asking you to be different than everyone else, and this can be very challenging.

Q: How does diabetes distress affect youth with diabetes?

A: Diabetes distress is common in youth with diabetes, although this has been more formally studied in youth with type 1 than in youth with type 2 diabetes. Living with diabetes and being looked at differently contributes to this distress. We see it in children, but teenagers especially must learn how to manage these challenges.

Stigma also contributes to diabetes distress in youth. People may assume youth with type 1 diabetes have type 2. There is judgment about lifestyle choices, and they must explain that their diagnosis is different than a diagnosis of type 2. Youth with type 2 have this pressure, too. People may say, “You ate too much sugar and junk food, you don’t exercise, this is all your fault,” which may not be true. It’s very important that we don’t make youth with diabetes feel like they are doing something wrong.

The Standards of Care in Diabetes—2024 recommends screening youth for diabetes distress on a regular basis. Other quality improvement initiatives, such as the T1D Exchange Quality Improvement Collaborative, offer best practices on mental health screening for youth with diabetes. 

Q: How can health care professionals better understand and address the challenges faced by youth with diabetes? 

A: Health care professionals should meet them where they are. What is it the youth wants? What is the most important thing on their mind? If all we’re doing is looking at our youth with diabetes as patients and telling them they need this CGM or they need that medicine, we’re missing an opportunity to have a conversation and understand their perspectives. 

We should talk about why there may be barriers to using technologies or taking medicines. What is either facilitating or standing in the way of managing their diabetes? What are the small goals they can measure, achieve, and set for themselves, and how can we help?

Q: Are there programs that build social and community connection for youth and families with diabetes?

A: Social connections and peer support are powerful when it comes to helping youth and their families address their challenges. Diabetes camps for youth with diabetes, for example, are great for meeting others with similar diagnoses and experiences. Many diabetes camps have scholarships available based on household income.

Clinics, including ours, are exploring the idea of peer groups and shared medical appointments. In this way, patients are learning from others who are going through something similar. Organizations, such as Breakthrough T1D (formerly JDRF) for youth with type 1 diabetes, can help develop these connections at a local level.

Q: How do health disparities affect youth with diabetes and their families? What are the barriers to accessing diabetes care? 

A: Data show that youth with diabetes who are publicly insured or are from racial and ethnic groups that have been historically underserved have less optimal glycemic control, as measured by hemoglobin A1C. In the long-term, they have higher rates of diabetes complications, which may be due to the structural and social determinants of health (SDOH) in these communities. 

Health care professionals need to address the social challenges. Many clinics and diabetes centers are doing this by connecting patients and their families with social workers, behavioral health care, or community resources.

Sometimes, biases from health care teams create disparity. Maybe we have a single parent working multiple jobs in addition to having a child with diabetes. The health care professional might think, “They have so much going on, we’ll mention an automated insulin delivery (AID) system later because it’s too much for the family to manage right now.” Some health care professionals may feel like this comes from a place of kindness, but it’s a disservice to delay a technology that would be helpful.

A solution would be for health care teams to have standard clinic guidelines for discussing and prescribing insulin pumps and CGMs. This approach would ensure they’re offering diabetes technologies and other treatments to everybody who needs them. Teams can think about how they would accommodate those who face social and other challenges. What could they do to support their care in an unbiased way?

Q: How does the role of the health care professional shift as youth with diabetes become older and more independent?

A: Many clinics are creating guidelines and workflows for transitions of care. Team members might include the Certified Diabetes Care and Education Specialist (CDCES), social worker, or clinician who can help youth manage care through various transitions. Some pediatric diabetes centers also have dedicated transition teams and staff for youth who are becoming teenagers or young adults.

We’re not necessarily just talking about the transition from pediatric to adult care. Perhaps we’re asking a younger child with diabetes what they are thinking about doing by themselves. Maybe we have someone who is going into junior high or high school, and they no longer want to go to the school nurse’s office or have school personnel following them all the time; they want to manage their own care. Part of our role is to assess their needs, knowledge, and readiness for a transition, and then provide guidance and resources. We don’t want them to feel as if they’re suddenly on their own.

Q: What diabetes technologies are available for youth with type 1 and type 2 diabetes? What are the risks and benefits of these technologies?

A: We recommend CGMs for most youth with type 1 diabetes. CGMs are also helpful for youth with type 2 diabetes—using insulin or not—to provide a sense of what blood glucose levels are with different activities and foods. Youth with type 2 diabetes may not need this information to adjust medication doses if they’re only taking an oral medication once or twice a day. But maybe they’ll see a high blood glucose alert, and it will affect their activity or other behavior.

One of the biggest benefits of a CGM, if you’re asking youth, is fewer finger pokes. The CGM alerts and alarms are a positive and a negative. The alerts can tell patients when they’re approaching high or low blood glucose levels, which is a good thing. But it’s also one of the biggest burdens—alarm and alert fatigue.

We use insulin pumps mostly for youth with type 1 diabetes. Insulin pumps provide more dosing flexibility and precision. Then there are the AID systems, which integrate the insulin pump with a CGM. Most of our youth with type 1 diabetes who are starting on insulin pumps today are using hybrid closed-loop AID systems.

Skin infection or irritation is a risk because these devices are on the body. Some youth also feel that certain types of pumps interfere with sports and other activities. Knowing that a device is on your body, connecting you all the time, can be hard for youth to come to terms with, particularly teenagers.

Q: What research is being conducted on improving diabetes management for youth with diabetes? What future research is needed?

A: We’re continuing to improve technologies, including moving toward fully closed-loop AID systems. We’re learning more about making existing technology suitable for more diverse populations. Many past studies have not included many youth with diabetes from different racial and ethnic groups or education backgrounds, or haven’t considered health and technology literacy, numeracy, and other barriers. This is where technology studies are going and where we need more research.

Another area is around social support. A question we’re asking in a current NIDDK-sponsored study is whether social support and peer groups for Latino youth with type 1 diabetes will help not just their overall feelings about diabetes, but how successful they are with technology use.

Other studies are starting to focus more on how we identify those at risk for complications or problems managing their blood glucose levels, which may be influenced by SDOH. The idea is to address the social challenges before something serious happens such as a diabetic ketoacidosis episode or an emergency room or hospital visit. Clinics and researchers are looking more closely at how we can integrate social and medical care for those youth with diabetes who may be most in need.

In what ways do you try to empower youth with diabetes? Share below in the comments.