98% of Parents Would Screen Children for T1D if Tests Were Free

Physicians and parents have ranked important features of conducting type 1 diabetes screening tests, which is crucial due to the increasing prevalence of type 1 diabetes in children.

Type 1 diabetes screening tests with education and monitoring plans designed to reduce the risk of diabetic ketoacidosis is preferred by both parents and pediatricians, shows the results of a survey published in Diabetes Care.

Parents and pediatricians also indicated a preference for treatment that is designed to delay type 1 diabetes, and they expressed concern for lower out-of-pocket costs.

Using a discrete-choice experimental methodology survey, the study, which was led by Campbell T. Hutton, MD, of JDRF in New York, was conducted to improve patient care by learning more about attributes for screening tests that are important to patients and physicians. The survey is timely because in the U.S., the prevalence of type 1 diabetes (T1D) in children is on the rise. There are approximately 1.45 cases per 1,000 children and young adults under the age of 20 years. Of these, approximately 58% of this patient group is already showing the signs and symptoms of diabetic ketoacidosis at the time of diagnosis (polyuria, polydipsia, weight loss, and fatigue). In children who develop diabetic ketoacidosis, 0.15% to 0.3% will die from the condition, but if cerebral edema is present, the death rate climbs to 20–25%. A delay in the diagnosis of T1D is the leading cause of diabetic ketoacidosis in pediatric cases, Hutton et al. writes.

“Diabetic ketoacidosis (DKA) at diagnosis in children and adolescents leads to extensive changes in brain structure and detrimental neurocognitive outcomes as well as poor long-term glycemic control. A delay in diagnosis of T1D is the leading cause of DKA in children,” the authors wrote.

The survey included 1,002 parents of T1D patients 18 years old or younger and 500 pediatricians.

“The results suggest that parents placed the highest relative importance on monitoring programs that reduced the risk of DKA to 1%, followed by the option of a treatment to delay the onset of insulin dependence by 1 or 2 years, and, finally, avoiding a $50 out-of-pocket cost,” the authors wrote.

Parents and pediatricians were less concerned with how the treatment was administered and where it was administered. Nor was timing as important, but pediatricians did place priority on monitoring programs that reduced the risk of diabetic ketoacidosis from 15-20% down to 1%. In addition to $50 out-of-pocket costs for screening tests, they were concerned about an option to delay treatment onset of insulin dependence by 1 or 2 years.

The authors noted several limitations to the study, including the use of hypothetical scenarios, and because it included a high number of parents with a child who has already been diagnosed with T1D, it may not be representative of the general population of which screening may be necessary.

Parents indicated that if they were offered a free test that was administered using their preferred mode and location, at 98%, almost all parents agreed they would screen their child for T1D.


Jessica L. Dunne, Anne Koralova, Jessie Sutphin, et al. “Parent and Pediatrician Preferences for Type 1 Diabetes Screening in the U.S.” Diabetes Care. 2021 Feb; 44(2): 332-339.