Real‐world experiences of adult individuals or caregivers of children who received teplizumab treatment in stage 2 type 1 diabetes

Type 1 diabetes (T1D) happens when the body destroys cells in the pancreas that make insulin. This ultimately causes high blood sugar. People with T1D often worry about the long-term effects of the disease. Teplizumab is the first FDA-approved treatment that delays the onset of high blood sugar in people in the early stages of T1D-when there are signs of cell damage and mild increases in blood sugar. We surveyed adults (N = 30) and caregivers (N = 17) of children treated with teplizumab about their journey before and after treatment. More than half of adults were initially told they might have a different type of diabetes, usually type 2, before being accurately diagnosed with early-stage T1D. Doctors specializing in diabetes were most often the ones who recommended screening for T1D. The most common reason to screen was a chance for more time before the onset of high blood sugar. Greater than 80% of people were grateful they or their child had the opportunity to receive teplizumab, and most would recommend it to others in a similar situation. After receiving teplizumab, most people still worried about their blood sugar and measured it frequently. Most thought that teplizumab would delay the disease progression to symptoms, and more than half thought teplizumab would make T1D easier to manage. These findings are the first to describe the journey of adults and caregivers of children treated with teplizumab, their reasons for screening, and their beliefs about the future.