Beyond the numbers: Integrating diabetes distress into diabetes care

Authors

Baray Sidhu BSc (biography, no disclosures) and Gerri Klein RN, MScN (biography, no disclosures)

What I did before

My approach to diabetes care has long been rooted in biomedical models focused on numbers: A1c, fasting glucose and post-prandial readings. To me, the target was clear: achieve an A1c below 7% and more than 70% time in range on continuous glucose monitoring (CGM), or at least demonstrate consistent progress towards those goals. I believed that if I provided my patients with the right tools of education, medication, diet and exercise plans, successful diabetes management would naturally follow.

If a patient’s numbers weren’t improving, I adjusted insulin doses, reinforced nutritional recommendations and increased the frequency of monitoring. When patients failed to follow through with treatment plans, most gave no indication of why they weren’t engaging in self-care tasks. At times, I would feel frustrated, especially for those who showed little progress despite my repeated efforts. I assumed that they just weren’t trying hard enough or that they didn’t care.

But I was viewing diabetes through a narrow clinical lens, focused on glycemic control and other quantitative measures to assess improvement. The emotional and psychological realities of living with diabetes and how they affect a person’s ability to engage in self-care were simply not part of my framework.

What changed my practice

My perspective on diabetes care began to shift when I started listening more closely to the stories behind the numbers.

A turning point came with a middle-aged woman whose A1c remained persistently high. I had tried everything, including changing insulins, providing more detailed education and having more frequent follow-ups, but her numbers didn’t improve. One day, during a routine visit, she told me that she stopped checking her blood sugars altogether. “It makes me feel like a failure,” she said. “Every number feels like I’m being judged.”

I realized that her struggle wasn’t because of a lack of knowledge or concern about her health. Rather, it stemmed from emotional exhaustion, guilt and fear. This prompted me to consult the literature to better understand how psychological factors cause emotional distress, and in turn, affect diabetes self-care.

Diabetes distress refers to the unique and often invisible emotional burden, stress, frustration and burnout that people experience while managing their diabetes.¹ While diabetes distress is primarily a psychological phenomenon, it is associated with significant physiological outcomes, including hyperglycemia, elevated total cholesterol and decreased quality of life.^2-4 Although diabetes distress may not be outwardly visible, there is substantial evidence in the literature linking it to additional diabetes-related risk factors and broader health complications.

While this article focuses on diabetes, the concept of distress is also relevant to other chronic conditions, particularly those that require complex therapy and frequent monitoring. Considering the emotional and psychological impacts of these conditions alongside their physical management is equally important in supporting care.

As health-care professionals, we know that diabetes self-care is incredibly challenging, requiring constant attention to blood sugars, a solid understanding of diet, exercise and medication and relentless decision-making. Diabetes is also an expensive condition, and obtaining medical supplies can cause financial strain. Fear about possible complications like hypoglycemia or long-term organ damage can be overwhelming. Patients living with diabetes describe feeling isolated and drained by the demands of their condition. Yet, too often, we underestimate how severely this ongoing burden can affect their mental health.

I started to understand that the problem was often not non-compliance, but rather it was unspoken distress. Unless health-care professionals acknowledge that distress, we could miss the root cause of disengagement.

What I do now

Today, my practice has shifted to embrace a model of diabetes care that values emotional well-being as well as glycemic control. I still use grounded tools like A1c and time-in-range data from CGM to guide clinical decisions, but I no longer rely on them alone. I have integrated emotional assessment directly in my workflow. All patients in my practice are screened for diabetes distress at intake and annually thereafter, using validated tools such as the Diabetes Distress Scale (DDS).⁵ The DDS offers versions for both type 1 and type 2 diabetes, allowing clinicians to select the most relevant tool for the population they serve.

One such tool that I use for my patients who have type 1 diabetes is the T1D Diabetes Distress Scale (T1DDS).⁶ This 28-item measure captures overall diabetes distress as well as seven specific subtypes: powerlessness, management distress, hypoglycemia distress, eating distress, negative social perceptions distress, physician distress and family/friends distress. Patients rate each item using a six-point Likert scale ranging from 1 (“not a problem”) to 6 (“a very serious problem”), with higher scores indicating greater levels of distress. Scores are calculated by averaging all 28 items for overall distress or by averaging the items within each subscale. Severity is classified using the mean score as follows⁶:

• <2.0 indicates little or no distress
• 2.0–2.9 indicates moderate distress
• ≥3.0 indicates high distress

The T1DDS gives me a clear snapshot of my patient’s overall diabetes distress and specific sub-distress areas that may require more attention or support.

To guide my clinical approach and next steps, I follow the simple yet effective five-step approach adapted from Tang (Figure 1 and Figure 2) that allows me to explore and address diabetes distress efficiently during routine visits without requiring substantial additional time during appointments.⁷

Download the 5-step approach and referral rolodex PDF.

Figure 1. 5-step referral for diabetes distress

The following resources can be used by family physicians, nurse practitioners, specialists and allied health providers to support patients experiencing diabetes distress.

Figure 2. Resources for clinicians and patients

The Mental Health + Diabetes Directory is a directory of Canadian-based mental health professionals with training in diabetes.

It is important to acknowledge systemic inequalities that may influence both the experience of diabetes distress and the ability to address it. Factors such as health care access, socioeconomic status and cultural context can all impact care. Adopting the five-step model to resource-limited or culturally diverse settings may involve integrating locally available support, partnering with community organizations and including traditional knowledge where appropriate.

When discussing distress with patients, using inclusive language and a trauma-informed approach can help create a safe space for open conversation. This includes avoiding judgmental terms, recognizing the potential impact of past negative health care experiences and being mindful of how language may be perceived across different cultural backgrounds.

These tools are simple but powerful. They invite patients to name the emotional weight they carry: the fear of complications, frustration with their body and the isolation that comes with living with diabetes. Often just asking these questions opens the door to meaningful conversations. When someone scores high on diabetes distress, I shift my focus. Instead of another insulin tweak or a lecture on diet and exercise, I ask about what is keeping them up at night, what feels hardest and where they may need more support.

Most importantly, I strive to shift the tone of interactions from judgment to curiosity and from directives to collaboration.

Rather than asking, “Why haven’t you been checking your blood sugars?” I ask, “How has it felt trying to manage everything lately?”

In doing so, I have learned that diabetes care extends beyond the numbers; it’s about addressing the unseen burdens that shape how people live with their condition every day. This simple shift transforms the conversation and agenda of the visit and often the outcome.

Resources for healthcare professionals

• Diabetes Distress Scale (DDS)
  • T1D Diabetes Distress Scale (T1DDS)
• The Mental Health + Diabetes Directory
• 5-Step Approach and Referral Rolodex (PDF)

References

1. Fisher L, Mullan JT, Skaff MM, Glasgow RE, Arean P, Hessler D. Predicting diabetes distress in patients with Type 2 diabetes: a longitudinal study. Diabet Med. 2009;26(6):622-627. doi:10.1111/j.1464-5491.2009.02730.x (View)
2. Grulovic N, Rojnic Kuzman M, Baretic M. Prevalence and predictors of diabetes-related distress in adults with type 1 diabetes. Sci Rep. 2022;12(1):15758. Published 2022 Sep 21. doi:10.1038/s41598-022-19961-4 (View)
3. McCarthy MM, Whittemore R, Gholson G, Grey M. Diabetes distress, depressive symptoms, and cardiovascular health in adults with type 1 diabetes. Nurs Res. 2019;68(6):445-452. doi:10.1097/NNR.0000000000000387 (View)
4. Joensen LE, Tapager I, Willaing I. Diabetes distress in Type 1 diabetes–a new measurement fit for purpose. Diabet Med. 2013;30(9):1132-1139. doi:10.1111/dme.12241 (View)
5. Polonsky WH, Fisher L, Earles J, et al. Assessing psychosocial distress in diabetes: development of the diabetes distress scale. Diabetes Care. 2005;28(3):626-631. doi:10.2337/diacare.28.3.626 (View on UBC)
6. Fisher L, Polonsky WH, Hessler DM, et al. Understanding the sources of diabetes distress in adults with type 1 diabetes. J Diabetes Complications. 2015;29(4):572-577. doi:10.1016/j.jdiacomp.2015.01.012 (View)
7. Tang TS. Calling all clinicians: A brief 5-step model for exploring diabetes distress in routine diabetes care. Can J Diabetes. 2024;48(6):409-413. doi:10.1016/j.jcjd.2024.03.005 (View on UBC)

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