The incidence and prevalence of type 1 diabetes (T1D) are increasing around the world.ⁱ Globally, more than one million children under the age of 20 have T1D, with over 130,000 new diagnoses each year.ⁱⁱ Diabetic ketoacidosis (DKA), a hallmark of T1D, accounts for 14 percent of all hospital admissions of patients with diabetes and 16 percent of all diabetes-related fatalities, and among patients with T1D, DKA is much more common in young children and adolescents than it is in adults. There is potential time, scope, and opportunity to intervene between symptom onset and development of DKA through screening.ⁱⁱⁱ

As we recognize World Diabetes Day on November 14, Jessica Dunne, Ph.D., Director of Screening, T1D Venture, World Without Disease Accelerator (WWDA), shares five things to know about T1D screening, including misconceptions in the space.

1. T1D can affect anyone, no matter their age.

There is a misconception in the healthcare world about who can get diabetes, and when. T1D can happen to anyone, and with each age group comes different barriers to diagnosis. Like most diseases, young, non-verbal children may struggle to vocalize the T1D symptoms they’re experiencing, such as increased thirst, frequent urination, and unintentional weight loss. Similar communication issues can also be a problem during adolescence, as teens may be apprehensive to share bodily changes and symptoms with their parents. There is also a misconception among some healthcare providers that adults don’t get T1D, and this can cause potential misdiagnoses and delays in treatment.

Children and adults with undiagnosed T1D can become alerted to it when they have DKA complications, which may become life-threatening. Elevated ketones are a sign of DKA, which is a medical emergency and needs to be treated immediately. Wide-spread screening at birth could alleviate these barriers to diagnosis and care by allowing for earlier awareness and, in turn, the ability to intervene sooner, possibly preventing life-threatening DKA complications.

2. Standardized screening education materials should be made available.

Healthcare providers need more standardized education around the signs and symptoms of T1D and what it would mean to implement a screening program. The first touchpoint should be with pediatricians, attempting to fit screening into their already-busy routine care schedule for their patients. For screening programs to be successful, we must emphasize the value of screening and what it means for the patient population.

Additionally, it must be emphasized that T1D is not just a disease of childhood. During their yearly physicals, adults receive annual glucose screenings. If the results show that they are dysglycemic (blood sugar that is too low or too high), patients will be labelled as pre-diabetic, which could signal T1D or type 2 diabetes (T2D) but often is assumed to be the latter. It is important for healthcare providers to know how to distinguish between an adult patient that has T1D versus T2D, which are two very different diseases with different care and management needs.

Outside of healthcare providers, there are a number of other stakeholders like payors, decision makers and guideline developers that need to understand the importance of screening, and the healthcare ecosystem as a whole has much work to do in this area.

3. Genetic risk for T1D can be learned at birth.

The WWDA’s T1D Venture team has supported several screening studies directly and indirectly. This includes working with a team of researchers in Washington on the Combined Antibody Screening for Celiac And Diabetes Evaluation (CASCADE) study, screening pre-existing bloodspots and new births in the Seattle-area for genetic markers to identify, in advance, which children may have a higher risk of developing T1D or celiac disease. The goal is to conduct follow-up testing to give a clearer picture of what is happening in a child’s body by testing for autoantibodies that often occur in the early stages of T1D or celiac disease. In parallel, we piloted a program with two Seattle public schools to disseminate information on T1D screening to children and their families.

We have also worked with JDRF and the Autoimmunity Screening for Kids (ASK) program with the Barbara Davis Center for Diabetes in the School of Medicine at the University of Colorado to focus on identifying children who are likely to develop T1D months to years before they begin to have symptoms, and monitoring them and educating family members on how to potentially prevent serious complications. We have also worked with the Rabin Medical Center in Israel on the Screening for Islet Autoantibodies in the Israeli Pediatric General Population for Detection of Pre-symptomatic Type-1 Diabetes Mellitus (ADIR) study, which is focused on screening for the presence of islet autoantibodies and implementing T1D screening into the standard of care for young children.

4. We can map out a path to make screening the standard of care.

Our hope is that widespread T1D screening can become a standard of care, which we see as possible through specific assays and diagnostics, and increased understanding in the space, along with evidentiary requirements needed to meet the standards of guideline developers.

Through work with a health economist, we gained greater clarity in what the T1D patient journey looks like, including for payors and providers to show the impact of screening from a cost perspective. Education and behavioral changes among healthcare providers, patients and parents will all be necessary to shift the collective perspective from a treatment-focused model like today to one of screening and interception going forward.

5. Health equity is key.

A key focus needs to be on health equity. Although T1D research has been historically focused on patients of Northern European descent due to the need for genetic background information, recent data from the SEARCH for Diabetes in Youth study found that T1D prevalence is rising in African American and Hispanic communities.^iv Through genetic screening, it’s important that programs don’t introduce additional health inequities into an already inequitable system, and redefine what a genetic risk score looks like in a multi-ethnic population.

Please consider this World Diabetes Day that, by intervening through early screening, we can hopefully make an impact in the prevention of the disease in the future. Learn more at on the World Diabetes Day website.

i Mobasseri, Majid et al. “Prevalence and incidence of type 1 diabetes in the world: a systematic review and meta-analysis.” Health promotion perspectives vol. 10,2 98-115. 30 Mar. 2020, doi:10.34172/hpp.2020.18
ii 3 IDF Diabetes Atlas: Eighth Edition 2017. Date accessed: October 20, 2021. http://diabetesatlas.org/IDF_Diabetes_Atlas_8e_interactive_EN/
iii Usher-Smith, J. A., et al. “Factors Associated with the Presence of Diabetic Ketoacidosis at Diagnosis of Diabetes in Children and Young Adults: A Systematic Review.” BMJ, vol. 343, no. jul07 1, 2011, pp. d4092–d4092., https://doi.org/10.1136/bmj.d4092.
iv Hamman, Richard F., et al. “The Search for Diabetes in Youth Study: Rationale, Findings, and Future Directions.” Diabetes Care, vol. 37, no. 12, 2014, pp. 3336–3344., https://doi.org/10.2337/dc14-0574.