Managing type 1 diabetes (T1D) in youth can create substantial family distress and affect diabetes care efforts. The current study aimed to establish a cut-point on the PAID-PR, a previously validated measure of diabetes distress in parents of youth with T1D.

The 18-item PAID-PR has shown construct validity with BGM frequency, A1c, and measures of diabetes-specific family conflict (DSFC) and general quality of life (QoL). Higher PAID-PR scores (range 0-100) indicate more diabetes distress. We applied a standard approach to identify a meaningful cut-point: scores ≥75th percentile of the distribution of PAID-PR scores obtained from 2 large clinic samples. Cutoff score was confirmed by convergent validity, including demographics, diabetes data from youth, and parent reported psychosocial measures (DSFC and QoL).

The sample included 527 parents of youth with T1D. Youth (50% male, 84% white) were aged (M±SD) 14.0±2.5 years with T1D duration 6.3±3.6 years; 86% were from 2-parent families. Youth checked BG 5.3±2.5 x/day; A1c was 8.4±1.1% and 69% were pump-treated. PAID-PR score was 43.3±18.5 (range 0-92, IQR 31-56). Analyses determined a cut-point of 56. Youth whose parents scored in the upper quartile vs. lower 3 quartiles were similar with respect to sex and racial distributions, age, percent 2-parent families, T1D duration, and BG checks/day. There were significant differences in A1c (8.6±1.2 vs. 8.3±1.1%) and pump use (60 vs. 71%) (p<.01 for both) between youth whose parents were in the upper vs. lower 3 quartiles of the PAID-PR. Parents in the upper quartile vs. lower 3 quartiles reported more DSFC and poorer youth QoL (p<.001 for both).

As youth-onset T1D may engender diabetes distress in families, pediatric diabetes teams recognize the need to identify parents experiencing extreme symptoms. A cut-point of 56 on the PAID-PR appears to identify families in need of additional medical and psychological support in order to improve biomedical and psychosocial outcomes.


L.J. Tinsley: None. P.V. Commissariat: None. L. Volkening: None. B. Anderson: Advisory Panel; Self; Sanofi-Aventis. M. Katz: None. L.M. Laffel: Consultant; Self; Eli Lilly and Company, Novo Nordisk Inc., Sanofi US, MannKind Corporation, Roche Diagnostics Corporation, Dexcom, Inc., Insulet Corporation, AstraZeneca, Boehringer Ingelheim Pharmaceuticals, Inc., Johnson & Johnson Diabetes Institute, LLC..

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