Aim: Positive incorporation of diabetes into one’s identity involves accepting and adjusting to the physical and emotional demands of T1D. Parents likely influence adolescent and young adult (AYA) illness identity. We evaluated alignment of AYA and parent experiences of diabetes distress (DD) and fear of hypoglycemia (FOH) , two potential barriers to T1D incorporation, and assessed associations of alignment with AYA incorporation.
Methods: AYA with T1D, ages 13-25 years with T1D duration ≥1 year, and their parents were recruited from 2 pediatric diabetes centers. AYA and parents completed validated measures of DD and FOH. AYA also completed a measure of T1D incorporation. Surveys were scored 0-100; higher score=more DD, FOH, incorporation. DD and FOH scores were categorized as Low (<median) or High (≥median) for each AYA and parent. For DD and FOH, dyads were grouped based on AYA/parent survey score alignment: Low/Low (L/L) , Low/High (L/H) , High/Low (H/L) , High/High (H/H) . AYA incorporation scores were compared among DD and FOH groups.
Results: There were 88 AYA/parent dyads (AYA age 16.8±2.4 years, T1D duration 8.6±4.2 years, 48% male, 91% White, 75% pump users, 69% CGM users, HbA1c 8.4±1.3%) ; 82% of parents were mothers. Incorporation scores differed significantly between the 4 DD groups (L/L: 77.3, n=23; L/H: 69.0, n=19; H/L: 59.7, n=22; H/H: 44.3, n=22; p<.001) . Incorporation scores of dyads with L/L FOH (72.0, n=24) were significantly higher than other FOH groups (L/H: 59.0, n=19; H/L: 59.9, n=25; H/H: 59.4, n=20; p=0.04) . AYA in dyads with H/H DD had significantly higher A1cs (9.2%) than other DD groups (8.2-8.7%) (p=0.004) ; there was no A1c difference among FOH groups.
Conclusion: Low DD in AYA is associated with the highest incorporation scores, suggesting identity is closely tied to personal experience of T1D. Low parent DD may protect AYA’s incorporation, while high FOH in either AYA or parents may hinder incorporation. Reducing AYAs’ DD and FOH may be valuable in integrating T1D into identity.
P.V.Commissariat: None. L.K.Volkening: None. S.A.Weinzimer: Consultant; Dompé, Research Support; Abbott Diabetes, Speaker's Bureau; Abbott Diabetes, Dexcom, Inc. E.Dassau: Employee; Eli Lilly and Company, Research Support; Dexcom, Inc., JDRF, National Institute of Diabetes and Digestive and Kidney Diseases, Stock/Shareholder; Eli Lilly and Company. 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.
National Institutes of Health (P30DK036836, DP3DK113511)