If you have diabetes, you don’t need anyone to tell you that it’s associated with significant distress—you know first hand. You deal with it every single day, multiple times a day.
The Diabetes Distress Scale was created not to prove to those with diabetes that they had distress, but to help them understand the biggest sources of diabetes distress (DD) so that they can focus their efforts to reduce it. It’s a tall order to simply “reduce your distress,” but if someone knows what their biggest stressors are, they can be more realistically addressed.
A 2015 study theorized, quite rightly, that those with type 1 diabetes would experience distress differently than those with type 2. After surveying hundreds of people, their theory held up: those with type 1 experience DD from more sources and tend to group those sources separately, whereas those with type 2 tend to group sources of DD as a single source of stress. The two groups experience the disease differently and require unique ways of categorizing their distress.
The researchers determined that the largest sources of DD for those with type 1 were powerlessness, management and eating distress, hypoglycemia distress, negative social perception distress, eating distress, physician distress, and friend/family distress. In general, people tend to score highest in the powerlessness category, which reflects the continuous frustrations of trying your best to control a disease that is never fully in your control.
The scale for those with type 2 includes 17 questions that measure the four major areas of type 2 distress. According to diabetesdistress.org, which offers the scale to anyone, scores between 1.0 and 1.9 reflect little to no distress, 2.0 and 2.9 reflect moderate distress, and scores higher than 3.0 indicate high distress. Any score above 2.0 is considered significant. The rating system is the same for the type 1 scale, but the survey includes 28 questions that measure distress in the identified seven areas.
In those with type 1, researchers found higher DD scores in younger adults as compared to older adults, females as compared to males, non-White patients as compared to White patients, those with partners as compared to those without, and those with complications as compared to no complications.
Diabetes distress is not the same as depression, and unfortunately some degree of distress is expected with diabetes. The scale helps patients and providers identify the greatest sources of patient distress and can be a useful tool in helping allocate efforts and resources. Acknowledging distress and its sources is a powerful step in addressing it and targeting interventions.
You can find the scale for both those with type 1 and type 2 here.
Stay healthy, friends!
Katie Taylor started writing in 5th grade and hasn't stopped since. Her favorite place to pen a phrase is in front of her fireplace with a cup of tea, but she's been known to write in parking lots on the backs of old receipts if necessary. She and her husband live cozily in the Pacific Northwest enjoying rainy days and Netflix.