Diabetes distress in adults with type 1 diabetes: Prevalence, incidence and change over time

J Diabetes Complications. 2016 Aug;30(6):1123-8. doi: 10.1016/j.jdiacomp.2016.03.032. Epub 2016 Apr 4.


Aims: To document the prevalence and 9-month incidence of elevated diabetes distress (DD) and the stability of DD over time using both single threshold and minimal clinically important differences (MCID) approaches.

Methods: Adults with type 1 diabetes (T1D) (N=224) completed the 28-item T1-Diabetes Distress Scale (T1-DDS) at baseline and 9months. A T1-DDS threshold was identified with spline analysis and MCID was calculated from the standard error of measurement.

Results: Analyses supported a cut-point of ≥2.0 for elevated DD. The prevalence and 9-month incidence of elevated DD was 42.1% and 54.4%, respectively. MCID was ±0.19 but varied by subscale (.26 to .50). Elevated DD was stable: only 20% crossed 2.0 over 9months. MCID analyses showed that change also occurred among those who remained either below or above 2.0 over time. Change varied by source of distress, with Powerlessness the most prevalent and stable. Using MCID, only participant age, gender and number of complications predicted change.

Conclusions: The prevalence, 9-month incidence and stability of elevated DD are high among adults with T1D, with change based on source of DD. We propose a combined cut-point/MCID framework for measuring change in DD, since each approach reflects unique characteristics of change over time.

Keywords: Change over time; Diabetes distress; Incidence; Predictors of change; Prevalence.

MeSH terms

  • Adult
  • Diabetes Mellitus, Type 1 / psychology*
  • Emotions
  • Female
  • Humans
  • Incidence
  • Male
  • Middle Aged
  • Prevalence
  • Stress, Psychological / epidemiology*