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The emotional burden of diabetes: A look at diabetes distress

Giese, Karla K., DNP, FNP-BC, BC-ADM, CDE

doi: 10.1097/01.NPR.0000541470.61913.1c
Feature: DIABETES DISTRESS

Abstract: Patients with diabetes are sometimes overwhelmed with the burden of self-care associated with the disease. Although it may seem appropriate to diagnose patients experiencing such emotional burdens with depression, the literature over the past 20 years has matured the concept of diabetes distress, which may more accurately describe the phenomenon.

Patients with diabetes are sometimes overwhelmed with the burden of self-care associated with the disease. While it may seem appropriate to diagnose patients experiencing such emotional burdens with depression, the literature over the past 20 years has matured the concept of diabetes distress, which may more accurately describe the phenomenon.

Karla K. Giese is an NP, diabetes specialist, board certified in advanced diabetes management, and director of diabetes quality for the AADE Accredited Diabetes Education Program at Lovelace Medical Group/Southwest Medical Associates, Albuquerque, NM, and an assistant professor of Nursing at Liberty University, Lynchburg, Va.

The author has disclosed no financial relationships related to this article.

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In his presidential address to the American Diabetes Association (ADA)'s scientific sessions attendees, Dr. Desmond Schatz called upon all stakeholders in diabetes care, including scientists, researchers, clinicians, governments, and the public to turn up the heat on diabetes to 212°.1 Why 212°? Two hundred twelve degrees Fahrenheit is the point at which water boils, creating movement and energy.

Dr. Schatz suggested if the lives of patients with diabetes mellitus are going to improve, a collective sense of urgency is needed to address all aspects of diabetes care, including educational, medication, behavioral, financial, and psychosocial.1

NPs should join in spreading the message around the urgent need for diabetes care research, including funding, advocacy, translation of available research into clinical practice, and providing excellent biopsychosocial clinical care to patients with diabetes. NPs have a significant footprint in chronic disease management, including diabetes, and are therefore well positioned to assist in addressing the urgent need for holistic diabetes care.

The psychosocial spectrum of diabetes care is vast and often includes various challenges for patients, such as difficulty coping with a diabetes diagnosis, mood and behavioral factors, regimen adherence, and other barriers to care. Literature on these subjects is now becoming more multidisciplinary and can be found in various journals. The purpose of this article is to discuss a psychological condition, diabetes distress, which adversely affects diabetes outcomes but is less commonly found in literature geared toward NPs.

Delineating the difference between what appears to be clinical depression or subclinical depression and diabetes distress in patients with diabetes has evolved since the 1990s.2 Depression, which is typically measured in clinical studies by self-report tools such as the Patient Health Questionnaire (PHQ-9) or Center for Epidemiologic Studies Depression (CES-D) scale, commonly manifests as depressed mood, difficulty concentrating, disordered eating, fatigue, irritability, and disordered sleeping.3,4

The ADA recommends routine screening for depression in patients with diabetes using standardized/validated tools at an initial visit, at periodic intervals, and when changes in life circumstances, disease, or treatment occur.5 The PHQ-9 and Beck Depression Inventory are often used in clinical practice for identifying depression. These tools are embedded in some electronic medical records for easy access.6 Depression has been associated with poor diabetes self-management and increased incidence of diabetes complications and mortality and should therefore be treated if present.7

In contrast with depression, diabetes distress refers to psychological aspects of diabetes, including the emotional burdens, stress, and worries associated with managing the disease.8 Patients with diabetes are highly individual, and coping with the disease state is likewise often personalized. Factors such as resilience, beliefs about health and spirituality, access to social support, and socioeconomic status may all play a role in a patient's ability to cope with a diagnosis of diabetes.

Table

Table

Many routine factors of diabetes management may be distressing to patients. The daily blood glucose monitoring, medication regimens, diet and lifestyle changes, surveillance and advice from loved ones, worry about hypoglycemia, and anxiety over past and future A1C results can be distressing to some patients. This distress can go beyond the ability to control the response with the patient's usual coping mechanisms, ultimately affecting overall adherence to self-care plans. Poor adherence is typically associated with both psychological problems and adverse disease outcomes.9,10

Diabetes distress is not depression; however, the ADA guidelines now recommend screening for diabetes distress just like depression (see Symptoms of depression vs. diabetes distress).5 In some of the earlier diabetes distress work, Fisher and colleagues found that “most patients with diabetes and high levels of depressive symptoms are not clinically depressed” but rather the symptomatology was “more reflective of general emotional and diabetes-specific distress.”10

Later echoing this, Gonzalez and colleagues suggested that a recurring problem in diabetes care has been labeling emotional distress in diabetes as major depressive disorder (MDD), when in fact, MDD and diabetes distress are distinct constructs.2 Diabetes-related distress has a greater impact on diabetes outcomes than depression. Therefore, antidepressants are unlikely to help, whereas identification and management of diabetes-related distress may be beneficial.

Psychologist William Polonsky and colleagues correlated domains of psychosocial adjustment unique to patients with diabetes (samples included both type 1 diabetes mellitus [T1DM] and type 2 diabetes mellitus [T2DM]) with the degrees of diabetes-related distress.11,12 Diabetes distress is measured predominantly using one of two tools: the Problem Areas in Diabetes (PAID) survey developed in 1995, or the Diabetes Distress Scale (DDS), which addresses some of the PAID's limitations.11,12

Discussions remain ongoing about which tool to use in which diabetes populations. Recent literature out of Australia favors the PAID tool as a measure of general diabetes distress and the DDS to measure emotional burden and regimen-related distress.13 Alternatively, Schmitt and colleagues compared the two tools, concluding with equal support for either PAID or DDS.14 Current work is underway to delineate T1DM distress compared with T2DM.15

The author prefers the DDS for three reasons: a two-item diabetes distress screening tool is available, personal clinical experience with DDS, and the DDS provides a measure of provider contribution to the patient's distress, which is important from a quality perspective. Therefore, for the purpose of this article, the remaining focus will be on the DDS.

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Diabetes distress themes: Incidence and screening

The Diabetes Attitudes, Wishes and Needs (DAWN) study provided a significant contribution to the diabetes distress and psychosocial diabetes literature base. An international group of patients with diabetes and healthcare providers—both physicians and nurses—were queried specifically about their attitudes and what they felt to be their needs and wishes about diabetes and diabetes care.16 Themes emerged that were consistent with a finding of diabetes distress, including patient concerns regarding self-management (diet, lifestyle adherence), fear of complications, fear of insulin injections and associated hypoglycemia, complicated regimens, social and psychological burdens, financial barriers, self-blame, anxiety, and helplessness.16

Providers in the study reported negative attitudes toward insulin, including the perception that insulin was undesirable to patients, too difficult to dose, and too time consuming for providers to manage.16 The Diabetes Attitudes, Wishes and Needs Second Study (DAWN2)—a study specifically aimed at improving the understanding of unmet psychosocial needs of patients with diabetes—further confirmed the psychological impact of diabetes in addition to identifying gaps around psychosocial and self-management education and support.17

Initial screening for diabetes distress can be accomplished with the 2-Item Diabetes Distress Screening Scale (DDS2), a shortened version of the full screening tool.18,19 The diabetes distress scales are copyrighted by the Behavioral Diabetes Institute, which is available in many languages, and according to the website, available free of charge to nonprofit organizations for use in clinical care and research (behavioraldiabetes.org). The short screen asks patients to score the degree (over the past month) that they have felt overwhelmed by the demands of living with diabetes and felt that they are failing with their diabetes routines.18

A positive short screen should prompt the clinician to administer to the full DDS-17 tool. The full DDS-17 tool is written at approximately a seventh-grade reading level, is applicable to both genders, and has been tested in several major ethnic groups (see behavioraldiabetes.org for complete scales).12 Overall, the incidence of severe diabetes distress has been reported in between 18% and 46% of adults with diabetes, with patients with T2DM having a higher incidence of diabetes distress in some studies.13

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Scoring of diabetes distress

Scoring of the DDS two-item screening tool is considered positive when a patient's average score is 3 or greater.20 According to the author of the tool, the full 17-item DDS uses the following cut points: little to no distress is indicated when the patient's total score is lower than 2; moderate distress is indicated with a total score of 2.0 to 2.9; and high/severe distress is indicated with total scores of 3.0 or higher.20

Questions on the full DDS are categorized based on the scoring sheet to reflect both a composite (overall) score and distinct domain scores. The distinct categories, or domains, of diabetes distress include emotional distress, provider distress, regimen distress, and interpersonal distress.20,21 There is potential for a patient to show only moderate distress on the whole scale, yet score high distress in a particular domain. Therefore, it is important to look at the scale's individual domain scores.

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Interventions for diabetes distress

Interventions aimed at improving diabetes distress depend somewhat on the domain of distress but are largely anchored in diabetes education and a supportive professional and social atmosphere.

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Regimen distress

Regimen distress includes themes around the day-to-day management of diabetes, including diet, physical activity, glucose testing, and medication regimens.12,20 One group with specific needs is the patient with T2DM in need of insulin. Diabetes is a progressive disease that often requires insulin support for glucose control as the disease progresses. Society embraces success. Unfortunately, insulin is commonly perceived by patients as a symbol of failure and is often associated with many myths.

Tanenbaum and colleagues used focus group-based qualitative research to find high levels of regimen-related distress among patients with T2DM requiring insulin. These findings are in addition to other observed themes, including difficulties around navigating the healthcare system, injecting oneself with insulin, and fluctuations in glucose levels.21

NPs should acknowledge and explore patients' fears and worries about insulin, including the potential for, avoidance of, and treatment of hypoglycemia. Many patients require a combination of oral agents and injectables. This medication regimen coupled with frequent glucose monitoring can become both psychologically and financially overwhelming. Diabetes self-management education and support (DSME/S) classes are designed specifically to improve patient understanding of medication uses and proper administration techniques, along with education around self-management and coping with the diagnosis and living with diabetes.22

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Interpersonal and emotional distress

Interpersonal distress themes center on the desired level of support from friends and family as well as this support system's general lack of understanding of the difficulties of living with diabetes.12,20 Relationships can become tense as loved ones offer well-intentioned yet unsolicited advice around food choices and activity level (or lack thereof). Helping patients and their support systems openly discuss the degree of surveillance and unsolicited advice can help set boundaries and expectations.

For instance, a loved one may be encouraged to ask, “How would you like me to be involved in your diabetes care. Only if requested, or would you like gentle, loving reminders?” Emotional distress can include feelings of anger, worry, and fear, a fatalistic view of diabetes, and the overwhelming feeling that diabetes controls one's life.12,20 Self-efficacy at its very root is about one's confidence to effectively navigate a particular situation.23

Diabetes DSME/S, whether in-group or individual settings, can provide critical empowerment to patients with heavy emotional burdens related to their diagnosis and treatment. Similarly, encouraging patients to attend lay seminars at senior or community centers can also provide social support and knowledge around the disease process.

Because DSME/S is shown to improve outcomes in diabetes and is the standard of care, removing barriers to access is important.5,22 Clustering same-day diabetes education appointments with provider appointments and shared medical appointments has shown promise in appointment adherence.24 Telehealth education visits are also a good option. Having a certified diabetes educator on location can help reduce the distress of traveling to unfamiliar locations. Such alternative models for education and support may be particularly helpful for rural practices or those with high “no show” rates.

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Provider-related distress

Providers can also be a source of patient distress. Patients experiencing provider-related distress may not perceive that they have confident knowledge about the disease or their plan of care, may feel they have unclear instructions, or may feel their provider is difficult to access or lacks empathy.12,20 Several contributing factors to provider-related distress include clinical inertia, worry about office visit time commitment, advanced disease management deficit, and prevalent negative attitudes around insulin prescribing, dosing/titrating, and ongoing management.9

Provider biases around obesity, a common comorbidity with T2DM, can also stress the provider-patient relationship. Such factors are not consistent with Schatz's call to urgency. NPs should practice self-reflection on attitudes toward diabetes as well as diabetes management skills to avoid being a source of provider-related diabetes distress.

If the complexity of diabetes management is beyond the NP's comfort level, referral to a specialty NP, preferably a board-certified advanced diabetes management clinician, diabetologist, or endocrinologist is appropriate while the NP acquires the necessary knowledge base.

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Coding

The ICD-10 does not include a code for diabetes distress. The standard in coding is to code the diabetes first, such as E11.9 (T2DM without complications), E11.65 (T2DM with hyperglycemia), or other applicable diabetes codes, followed by a code reflecting the emotional burden of diabetes distress, such as Z73.0 Burnout; Z73.9 Problem related to life management difficulty; or R45.3 Apathy.25 Clinical judgment is necessary when coding.

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Future implications

Satisfaction surveys have been part of hospital care for years. Similar surveys are now surfacing in outpatient care. While “satisfaction” does not necessarily equate to quality, implications for quality improvement based on diabetes distress categories still abound. For instance, if provider-related distress is high, then the health system may need to conduct focus groups to define the provider-related problems.

Is the problem isolated to just a few providers, or is it more systemic? Similarly, if regimen, emotional burden, or interpersonal-related distresses are frequent, systems may need to evaluate the degree of “support” toward self-efficacy and self-management patients are receiving, whether via DSME/S or other means, such as telehealth, web-based learning, psychological services, group support meetings, or other community services.

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Conclusion

Psychosocial care and support can be challenging to provide during short primary care visits. Establishing a milieu of trust in which a patient is willing to disclose personal struggles can take time—not only in the present, but also longitudinally. Fortunately, NP-patient relationships are often longitudinal, caring, trusting relationships that may support patient self-disclosure of diabetes-related distress.

NPs, like other clinicians and stakeholders in diabetes care, are integral players in creating and sustaining the energy and movement the ADA is calling for toward improvement of diabetes care.1 Understanding the concept of diabetes distress, using associated screening and diagnostic tools, and employing self-reflection techniques around diabetes management skills will promote the translation of diabetes distress literature into NP clinical practice.

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REFERENCES

1. Schatz D. 2016 presidential address: diabetes at 212°-confronting the invisible disease. Diabetes Care. 2016;39(10):1657–1663.
2. Gonzalez JS, Fisher L, Polonsky WH. Depression in diabetes: have we been missing something important. Diabetes Care. 2011;34(1):236–239.
3. van Steenbergen-Weijenburg KM, de Vroege L, Ploeger RR, et al Validation of the PHQ-9 as a screening instrument for depression in diabetes patients in specialized outpatient clinics. BMC Health Serv Res. 2010;10:235.
4. Radloff LS. The CES-D Scale: A self-report depression scale for research in the general population. Applied Psychol Meas. 1977;1(3):385–401.
5. American Diabetes Association. Standards of medical care in diabetes—2018. Diabetes Care. 2018;41:S1–S159.
6. Beck AT, Ward CH, Mendelson M, Mock J, Erbaugh J. An inventory for measuring depression. Arch Gen Psychiatry. 1961;4(6):561–571.
7. Park M, Katon WJ, Wolf FM. Depression and risk of mortality in individuals with diabetes: a meta-analysis and systematic review. Gen Hosp Psychiatry. 2013;35(3):217–225.
8. Fisher L, Hessler D, Glasgow RE, et al REDEEM: a pragmatic trial to reduce diabetes distress. Diabetes Care. 2013;36(9):2551–2558.
9. Skovlund SE, Peyrot M. The Diabetes Attitudes, Wishes, and Needs (DAWN) program: a new approach to improving outcomes of diabetes care. Diabetes Spectr. 2005;18(3):136–142.
10. Fisher L, Skaff MM, Mullan JT, et al Clinical depression versus distress among patients with type 2 diabetes: not just a question of semantics. Diabetes Care. 2007;30(3):542–548.
11. Polonsky WH, Anderson BJ, Lohrer PA, et al Assessment of diabetes-related distress. Diabetes Care. 1995;18(6):754–760.
12. 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.
13. Fenwick EK, Rees G, Holmes-Truscott E, Browne JL, Pouwer F, Speight J. What is the best measure for assessing diabetes distress? A comparison of the Problem Areas in Diabetes and Diabetes Distress Scale: results from Diabetes MILES-Australia. J Health Psychol. 2018;23(5):667–680.
14. Schmitt A, Reimer A, Kulzer B, Haak T, Ehrmann D, Hermanns N. How to assess diabetes distress: comparison of the Problem Areas in Diabetes Scale (PAID) and the Diabetes Distress Scale (DDS). Diabet Med. 2016;33(6):835–843.
15. Fisher L, Hessler D, Polonsky W, Strycker L, Masharani U, Peters A. Diabetes distress in adults with type 1 diabetes: prevalence, incidence and change over time. J Diabetes Complications. 2016;30(6):1123–1128.
16. Alberi G. The DAWN (Diabetes Attitudes, Wishes and Needs) study. Pract Diabetes Int. 2002;19:22–24.
17. Nicolucci A, Kovacs Burns K, Holt RI, et al Diabetes Attitudes, Wishes and Needs second study (DAWN2): cross-national benchmarking of diabetes-related psychosocial outcomes for people with diabetes. Diabet Med. 2013;30(7):767–777.
18. Fisher L, Glasgow RE, Mullan JT, Skaff MM, Polonsky WH. Development of a brief diabetes distress screening instrument. Ann Fam Med. 2008;6(3):246–252.
19. Hessler D, Fisher L, Glasgow RE, et al Reductions in regimen distress are associated with improved management and glycemic control over time. Diabetes Care. 2014;37(3):617–624.
20. Fisher L, Hessler DM, Polonsky WH, Mullan J. When is diabetes distress clinically meaningful?: establishing cut points for the Diabetes Distress Scale. Diabetes Care. 2012;35(2):259–264.
21. Tanenbaum ML, Kane NS, Kenowitz J, Gonzalez JS. Diabetes distress from the patient's perspective: qualitative themes and treatment regimen differences among adults with type 2 diabetes. J Diabetes Complications. 2016;30(6):1060–1068.
22. Powers MA, Bardsley J, Cypress M, et al Diabetes self-management education and support in type 2 diabetes: a joint position statement of the American Diabetes Association, the American Association of Diabetes Educators, and the Academy of Nutrition and Dietetics. Clin Diabetes. 2016;34(2):70–80.
23. Bandura A. Self-Efficacy: The Exercise of Control. New York, NY: Worth Publishers; 1997.
24. Ruddock JS, Poindexter M, Gary-Webb TL, Walker EA, Davis NJ. Innovative strategies to improve diabetes outcomes in disadvantaged populations. Diabet Med. 2016;33(6):723–733.
25. American Medical Association. ICD-10-CM 2015: The Complete Official Codebook. Chicago, IL: American Medical Association; 2014.
Keywords:

diabetes distress; diabetes treatment; emotional burden

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