Supporting Your Patients with Diabetes Distress
Written By Helen d’Emden MPhil Adv APD CDE
A recent study of 1000 adults with type 1 and type 2 diabetes highlighted the need for health professionals to have a better understanding of the emotional, social and health impacts of living with diabetes. Furthermore, to address individual needs and concerns respectfully in a non-judgmental manner. There is a need for more holistic person-centered care1 .
In all international diabetes standards of care, optimising quality of life is now a ‘key goal’ of diabetes management along with the prevention or delay of complications. Diabetes is a demanding condition. And as a result it requires multiple daily decisions and tasks to stay well. Consequently, this can have a big impact on emotional well-being and quality of life for many people.
What is diabetes distress?
Diabetes distress is a term to describe the common emotional distress from living with diabetes. Diabetes management is relentless. Multiple decisions and tasks for self-management are required each day, coupled with concern about potential or current long-term complications. There may be increased financial burden, social concerns and stigma. The level of diabetes distress can change during the course of the diabetes journey. Therefore it is best to assess diabetes distress at key points in time, such as, at diagnosis, annually, during significant changes in treatment or worsening of diabetes-related long-term complications.
Prevalence of diabetes distress
One in four people with type 1 diabetes experience severe diabetes distress. In people with insulin-treated type 2 diabetes, the rates are one in five, and one in ten people with non-insulin treated type 2 diabetes are seen. Diabetes distress can result in sub-optimal self-management of diabetes, HbA1c, and impaired emotional wellbeing. It is more common that depression yet if left untreated, diabetes distress can result in depression or diabetes burnout.
Barriers to supporting patients with diabetes distress
Health professionals often say they lack the training, confidence and skills to address emotional concerns. Furthermore, they believe there isn’t enough time in routine consultations. However, experts advise that consultations are less effective if we don’t address such concerns. And as result, we will miss out on finding ways to best support a person to achieve better diabetes outcomes. Adopting a person-centred approach is important in all consultations.
Strategies and tools to support patients with diabetes distress
A routine consultation can easily assess diabetes distress by using the Problem Areas In Diabetes (PAID) questionnaire, and is one of the most common diabetes distress measures. It identifies concerns with diabetes management and most importantly, it can open up conversations about barriers for optimal self-management. The questionnaire includes questions relating to the treatment plan, diabetes-related emotions, diabetes related finance concerns and social supports.
The PAID questionnaire only takes 5 minutes to complete and it is easy to score. It has 20 questions and a five-scale rating for answers of 0-4 with 0 representing “no problem” and 4 “a serious problem”. The scores are added up and multiplied by 1.25, to give the total score between 0 – 100. A score of 30 or higher indicates diabetes distress, and a of 40 or higher indicates severe diabetes distress. Individual answers that are rated either a 3 or 4, are worth discussing too. You can find a link to the PAID questionnaire in the resource list below.
Diabetes distress tends to be associated with higher HbA1c, but this is not always the case. Therefore, it is important to check in with all individuals, so you don’t overlook specific concerns and miss opportunities to help improve quality of life and diabetes outcomes.
Resources to support people with diabetes distress
Diabetes distress resources for people living with diabetes
- Diabetes distress fact sheet
- When and how psychologists can support people with diabetes fact sheet
- Diabetes NSW & ACT counselling service
- Type 2 diabetes and me online program ( Supporting your emotional health)
Diabetes distress resources for health professionals
- PAID Questionnaire
- Diabetes distress podcast
- The Behavioural Centre for Research into Diabetes have developed The Diabetes and emotional health: a practical guide for health professionals supporting adults with type 1 or type 2 diabetes2
- Diabetes Qualified CPD accredited online learning courses
- Black Dog Institute
- Hendrieckx C, Holmes-Truscott E, Speight J. Ten tips for more effective and satisfying clinical consultations. Journal of Diabetes Nursing. 2020;24(4):1-7.
- Hendrieckx C, Halliday J, Beeney LJ, Speight J. Diabetes and emotional health: a practical guide for health professionals supporting adults with type 1 or type 2 diabetes. Canberra: National Diabetes Services Scheme, 2nd edition: The Commonwealth of Australia; 2020.