Preferences for type 2 diabetes health states among adolescents with or at risk of type 2 diabetes mellitus

Objective: We evaluated how adolescents with or at risk of type 2 diabetes (T2DM) and their parent/guardians (parents) value health states associated with T2DM. Methods: We interviewed overweight/obese [Body Mass Index (BMI) >= 85th percentile], 12-18-yr old adolescents with T2DM, prediabetes, or insulin resistance (IR) and a parent. The standard gamble (SG) method elicited preferences (utilities) for seven hypothetical T2DM health states reported on a scale from 0 (dead) to 1 (perfect health). Adolescent's current health was evaluated with the SG and Health Utilities Index (HUI). Results: There were 70 adolescents and 69 parents. Adolescents were 67.1% female and 15.5 +/- 2.2 yr old; 30% had T2DM, 30% prediabetes, and 40% IR. Almost half (48.6%) had a BMI > 99th percentile. Parents (83% mothers) were 45.1 +/- 7.3 yr old and 75% had at least some college/technical school education. Adolescents and parents rated T2DM with no complications treated with diet as most desirable [median (IQR); adolescent 0.72 (0.54, 0.98); parent 1.0 (0.88, 1.0)] and end-stage renal disease as least desirable [adolescent 0.51 (0.31, 0.70); parent 0.80 (0.65, 0.94)]. However, adolescents' utilities were significantly lower (p <= 0.001) than parents for all health states assessed. Adolescents' assessments of their current health with the SG and HUI were not correlated. Conclusions: Adolescents with or at risk of T2DM rated treatments and sequelae of diabetes as significantly worse than their parents. These adolescent utilities should be considered in the evaluation of treatment strategies for youth with T2DM. Family-based programs for T2DM must also be prepared to address conflicting preferences in order to promote shared decision-making.