Purpose: This study investigates clinical and demographic variables associated with youth who died of type 1 diabetes mellitus [T1D] complications between the years 2011-2018.

Methods: Retrospective chart review was performed on patients with T1D who died between the years 2011 to 2018 at a single center. Deceased youth autopsy reports were reviewed for causation of death.

Results: In the deceased cohort, 57% were female, 71% were non-Hispanic white, median age at death 19 years (range 15-22), 40% Medicaid. One case was excluded in analysis as youth transitioned T1D care to adult provider prior to death. Median duration between T1D diagnoses and death was 9.9 years. Median/mean hemoglobin A1c (A1c) year prior to death was 9.65/9.71%. Majority of patients (71%) were on basal bolus insulin regimen at time of death. Causation of death was determined as diabetic ketoacidosis in 85% of patients; unclear in others, although one case review documented precedent hypoglycemia. At the time of death, 71% of patients had transitioned out of the care of their primary caregiver (i.e., parent/guardian) into either state custody, college, or living independently. Notably, one patient had a history of 14 (known) addresses, with cohort mean/median # of lifetime addresses 5.57/3.

Conclusions: Although T1D providers clinically suspect the psychosocial factors that predispose to T1D complications, little is known about the contextual characteristics of youth who die of T1D. Given the low volume but extreme risk of T1D death in youth, it is prudent to investigate clinical and demographic variables to develop predictive models by which to inform interventions. Study findings indicate that A1C is not a predictor of mortality, but address history and transition of care out of the primary caregiver may be. Future direction includes comparing data between living and deceased patients to determine a predictive risk factor score for early death; and thus institute targeted interventions.


A.L. Cymbaluk: None. S. Corathers: None. N.Y. Jones: None.

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