Overestimation of Risk and Increased Fear of Long-term Complications of Diabetes in People with Type 1 and 2 Diabetes

Objective The quality report of the disease management programmes of North Rhine Westphalia 2016 showed prevalences for long-term complications (neuropathy, nephropathy, retinopathy) of less than 30 % for people with diabetes type 1 (DM1) and type 2 (DM2). The aim of this study was to assess risk expectations and fear regarding long-term complications of diabetes in people with DM1 and DM2. Methods We assessed risk expectations and fear regarding diabetes complications in people with DM1 (n =110) and DM2 (n=143 without insulin, n = 249 with insulin) visiting an University outpatient department of metabolic diseases. Fear of longterm complications was measured with the "Fear of Complications Questionnaire (FCQ)" (range 0-45 points, scores 30 suggest elevated fear). Participants were asked to estimate general and personal risks of long-term complications 10 years after developing diabetes in %. Results Elevated fear of complications (FCQ scores >= 30) was observed in 34.5, 25.9, and 43.0 % of those with DM1, DM2 without insulin and DM2 with insulin, respectively. Participants estimated a mean general risk of diabetes-related complications after 10 years amounting to 45.9 +/- 15.8% (DM1), 49.7 +/- 15.4 % (DM2 without insulin), and 52.5 +/- 16.4 % (DM2 with insulin) and personal risk with 52.5 +/- 24.4 % (DM1), 45.8 +/- 22.7 % (DM2 without insulin), and 54.1 +/- 23.4 % (DM2 with insulin), respectively. Higher risk expectations were associated with higher fear of complications (p <0.001). Conclusion Risk estimations regarding long-term complications were exaggerated in people with DM1 and DM2. About one third of the participants reported elevated fear of complications. Participants' risk expectations and fear regarding diabetes complications appear excessive compared to population-based prevalence rates.