The Emotional Burden of Diabetes during Emerging Adulthood: "Cost. Everything Else Is Secondary."

Emerging adults (EA) with type 1 diabetes (T1D) have multiple developmental stage-specific challenges in diabetes management, including the transition to financial independence. The recently validated Problem Areas in Diabetes-EA (PAID-EA) survey is the first measure of diabetes distress (DD) in EA to include financial concerns. A sample of 287 participants with T1D ages 18-30 years completed an online survey including the 25-item PAID-EA, measures of DD and depressive symptomology, and clinical and demographic questions. To evaluate content validity, 2 open-ended questions asked for the most important worry mentioned and what worries were missed in the questions. Responses were analyzed using directed qualitative content analysis. As cost emerged as a major contributor to DD, responses to the PAID-EA item 21 (“I worry about the cost of diabetes”) were analyzed using Chi-square or Fisher’s exact test to assess participant factors associated with cost-related DD. Most participants (89%) provided open-ended responses (78% female, mean age 24 years) . Cost was the most frequent code in the qualitative analysis: 15% reported DD related to cost and 6% to insurance. Responses included worries about aging out of parents’ insurance and limitations on career choices to ensure payment for diabetes supplies. In all survey respondents, 90% replied “Agree” or “Somewhat agree” to PAID-EA item 21. Responses to this item did not differ by gender, age (< vs. >=25) , continuous glucose monitor use (Y/N) , insulin pump use (Y/N) , student status (full time vs. part time vs. no) , income (< vs ≥$75k) , or insurance status (parent vs. own vs. uninsured) . A greater proportion of those with HbA1c ≥ 7% endorsed worry about cost than with HbA1c < 7% (94% vs. 87%, p = 0.008) . Diabetes cost was a major contributor to DD in this sample of EA with T1D. Worry about diabetes costs was endorsed by nearly all participants, especially those not meeting glycemic targets. Managing the cost of diabetes care for EA may be an avenue to reduce DD. Disclosure R.J.Vitale: None. K.Wentzell: None. L.M.Laffel: Advisory Panel; Medtronic, Roche Diabetes Care, Consultant; Boehringer Ingelheim International GmbH, Dexcom, Inc., Dompé, Insulet Corporation, Janssen Pharmaceuticals, Inc., Lilly Diabetes, Novo Nordisk, Provention Bio, Inc. Funding NIH T32DK007260NIH T32DK007529NIH P30DK036836