Diabetes can be a challenging disease to navigate because the onus of management lies predominantly with the affected individual. Diabetes self-management can be observed in a number of behaviors, including monitoring glucose levels, adhering to oral medication schedules, dosing with insulin, eating specific foods—avoiding others, and engaging in physical activity [1]. However, these observable self-management behaviors are often preceded or followed by an array of associated thoughts and feelings, including:
- cognitive vigilance to glucose levels
- worries about hypoglycemia
- thinking through how food and physical activity might impact glucose
- worries about proximal and distal complications
- struggles with prescribed health choices for eating and lifestyle.
In addition to internal pressures, people with diabetes (PWD) can also encounter social stigma, shame, and guilt about how they manage their diabetes—in some cases, this can even manifest as blame for not working hard enough to be “healthy”. While many PWD experience a high quality of life and are resilient in the face of this chronic disease and its management, there is no doubt that it can be a burden that requires consistent attention.
…Directly asking the individual how their management is going or whether their diabetes is overwhelming can open the door to a more in-depth conversation about distress.
The emotional impact of diabetes
Layered on top of the burdens noted, PWD often experience diabetes distress, the unique, often hidden, emotional burden and worry that is part of managing a severe, demanding chronic disease like diabetes [2]. Diabetes distress is strikingly common, with high point prevalence (mid 40%), and 9-month incidence rates as high as 55% across both type 1 and type 2 diabetes [3,4]. Further, without intervention, diabetes distress is relatively stable over time [3]. This is concerning given that recent research indicates that even subthreshold emotional distress is associated with more difficulty in performing self-management [5].
Demystifying depression versus diabetes distress
Diabetes-related distress differs from depression in that it is more prevalent in PWD and, when present, a stronger predictor of difficulty with self-management and higher glycated hemoglobin (HbA1c) [6-8]. Diabetes distress is a common and major contributor to poorer health behaviors and outcomes across both type 1 and type 2 diabetes.
While many PWD will experience diabetes distress, the presentation can vary. Typically, an individual with diabetes distress will have worries, concerns, frustrations and disengagement with diabetes specifically, as opposed to the more general concerns seen with depressive symptoms, as outlined in the examples below.
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Over time, Susan’s experience may impact her motivation to monitor her glucose levels because of the perception that the desired outcome of stability is impossible to achieve. All of the feedback that Susan is used to receiving in relation to her diabetes is negative, which can ultimately lead to disengagement with the positive routines she had previously established, ie, less self-monitoring, less exercise, and higher consumption of fat and carbohydrate-rich foods.
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Anna does not have much incentive to manage her diabetes the way her parents desire because she has already lost privileges and is distressed. As a consequence of her diabetes distress, Anna avoids dosing insulin in front of her friends and, worryingly, she rarely checks her glucose or takes her dose while alone, even when she feels hyperglycemic.
There is a direct impact of psychological distress on self-management behaviors, which in turn correlate with negative health outcomes. This becomes cyclical, where poorer self-management leads to more distress and more distress leads to poorer self-management. The changes exhibited by Susan and Anna demonstrate hallmark indicators of diabetes distress, including reduced engagement and decreased monitoring and dosing. Other common indicators are missing medical appointments, rising HbA1c levels, a general presentation of depressed mood or a decline in health.
Steps clinicians can take
As a clinician who may be tasked with recognizing the symptoms of diabetes distress, directly asking the individual how their management is going or whether their diabetes is overwhelming can open the door to a more in-depth conversation about distress. Reassuring PWD that, over the course of a lifetime with diabetes, there will be difficult and stressful times, normalizing these feelings, even stating that, at any given time, as many as 50% of PWD are experiencing diabetes distress, can be useful in some patients.
Validated surveys are recommended as a brief, reliable screen for diabetes distress. The most popular surveys are the Diabetes Distress Scale (DDS) for adults and partners, and Problem Areas in Diabetes (PAID) instruments for children, teens, and their parents. In a clinical setting, it may be most efficient to administer a brief screening version to adults such as the DDS-2 in order to prompt clinicians downstream to administer the longer version when a patient is positive for distress [9]. Versions of the PAID are available for teens, children, and parents [10]. All ask about the demands of living with diabetes, and aspects of worry and depressed mood [11].
Goal-setting and problem solving with patients
Once diabetes distress is identified, clinicians can teach brief problem-solving and “SMART” goal-setting to help patients alleviate some of the burden at the source of their distress. SMART goals are Specific, Measurable, Achievable, Realistic, and Time-bound. They are the cornerstone of starting the problem-solving process, which involves identifying a problem, selecting a solution to work on, setting a goal, determining the process to achieve the solution, and monitoring progress [12].
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Effective strategies to reduce distress often include behavioral activation (like the example of walking, above), improving problem-solving skills, and changing underlying health beliefs in a manner consistent with cognitive behavioral therapy [13]. While a diabetes care clinician will not take on broader therapy approaches, the clinician can refer to a behavioral health provider who can. In the USA, a recently developed program from the American Diabetes Association’s partnership with the American Psychological Association offers resources to find a behavioral health provider in your area that understands diabetes and its management [14]. Across all of these activities, discussing diabetes distress in a warm, supportive, and factual manner will help the individual with diabetes feel valued and validated, and more inclined to receive the necessary services.
Take-home message
In summary, PWD are very likely to experience diabetes distress. This is an uncomfortable and often hidden condition that has a negative impact on diabetes management and health outcomes. As a diabetes care clinician, offering support and guidance via empirically supported screening and treatment approaches will help the individual experiencing diabetes distress. Further, we recommend that treating clinicians refer, as needed, to behavioral health providers to ensure that the needs of PWD and the distress experienced are identified and managed.