‘Giant leap’ towards better treatment of diabetes distress

Researchers at Steno Diabetes Center Copenhagen (SDCC) have developed a tool to identify diabetes distress in people with type 1 diabetes. The questionnaire is quick and easy to implement in a clinical setting, potentially finding cases that would otherwise have gone unnoticed. 

Diabetes distress is a common psychological and emotional reaction to life with diabetes and the burden of daily self-management. As well as impaired well-being, it can lead to long-term elevated blood sugar and a lower quality of life. According to Diabetes UK, severe diabetes distress affects one in four people with type 1 diabetes. But symptoms vary widely, so it can be difficult to spot. 

This was the inspiration for Vibeke Stenov, researcher in Diabetes Management Research at SDCC, and her colleagues. 

“One of the challenges with diabetes distress is that it can be difficult to identify, because the symptoms are wide-ranging,” says Stenov. “It can be a feeling of powerlessness, where you feel that no matter what you do, it will never be good enough. Or it can be constant worries about the consequences of your blood sugar levels or the feeling that food and meals are restricting you, perhaps even controlling your life.” 

Helping people recognise and process concerns 

The questionnaire is based on an existing diabetes distress diagnostic tool, the Type 1 Diabetes Distress scale (T1-DDS-28), which contains 28 descriptions of concerns experienced by many adults with type 1 diabetes. The person is asked to rank each one from “not a problem” to “a very serious problem”.  

Stenov and her colleagues worked to identify which statements provided the best indication for overall diabetes distress, with the goal of producing a tool that was quicker to implement and therefore more likely to be used in clinical settings, while still being highly effective. Seven statements were selected for the final tool, such as, “Feeling that I am not as skilled at managing diabetes as I should be” and “Feeling that my diabetes doctor doesn’t really understand what it’s like to have diabetes”. 

“In addition to detecting diabetes distress, the tool can be used as a conversation starter, highlighting the topics that are important to the individual,” says Stenov. “During the consultation, you can then talk about the most relevant statements.” 

Stenov and her colleagues have also developed a treatment concept – REDUCE – where people with type 1 diabetes experiencing moderate to high levels of diabetes distress can discuss and process their concerns in a group setting, benefitting from social support and advice from peers.  

“This intervention helps people articulate their concerns and put them into perspective, as well as helping them recognise that it’s normal to find it difficult to live with this disease,” says Stenov. 

Unlike other group interventions that are led by psychologists, REDUCE can be led by a diabetes nurse, enabling more people to access the treatment. 

An ‘exciting and giant leap’ in the right direction 

The phenomenon of diabetes distress was first identified more than 20 years ago by American psychologist Larry Fisher. He is keen to highlight that it is not a mental illness, but rather “the often overlooked and expected concerns and frustrations associated with coping with a demanding chronic illness over a long period of time”.  

Fisher sees the new interventions from SDCC as a good way to involve clinical staff in identifying diabetes distress and implementing treatment as a routine part of clinical practice. 

“The Danish screening tool and treatment efforts have taken an exciting and giant leap in this direction, and the results will be extremely important for guiding the process in other clinical settings,” he says. 

Read about the development and validation of the screening tool and the impact of REDUCE in this research article by Stenov and her colleagues.  


Further information

Judith Vonberg, Communications Specialist, Novo Nordisk Foundation, +45 4172 7925, jvo@novo.dk 

Image: Vibeke Stenov