How to communicate with individuals and caregivers at the time of presymptomatic type 1 diabetes diagnosis

Plain Language SummaryLearning about an early-stage type 1 diabetes (T1D) diagnosis (stage 1 or stage 2) is often stressful for individuals and caregivers. It is important that people with early-stage T1D continue with regular healthcare visits for blood glucose checks and comprehensive education on warning signs and self-management, which is critical for preventing severe events such as diabetic ketoacidosis. Conversations between healthcare providers and their patients need to include how often T1D occurs in individuals at high risk, along with information about screening and early diagnosis of the disease. Many providers, especially those outside of diabetes specialties, find these conversations difficult to start and may be unsure about what topics to cover. The conversation should be tailored to the individual’s and caregivers’ prior experience with T1D. Guidelines recommend support for those with diabetes and their caregivers, ideally from diabetes-trained psychologists. However, in most settings this is unfeasible; support often falls to the healthcare provider doing the screening or delivering the diagnosis. This article provides some tools to help healthcare providers in their conversations with patients and caregivers. Conversations before and after screening for T1D are needed, and individuals and caregivers should be given the chance to ask questions and voice their concerns. Reassurance should be provided, along with information about early-stage T1D to help individuals and caregivers to participate actively in looking for changes in the individual’s blood glucose over time, consideration of any potential treatment, and taking care of their future health.