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The emotional burden of diabetes: A look at diabetes distress

Article in The Nurse Practitioner · August 2018

DOI: 10.1097/01.NPR.0000541470.61913.1c

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The emotional burden of diabetes:

A look at 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.

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

n his presidential address to the American diabetes care, including educational, medication, be-
I Diabetes Association (ADA)’s scientific ses-
sions attendees, Dr. Desmond Schatz called
havioral, financial, and psychosocial.1
NPs should join in spreading the message around the
upon all stakeholders in diabetes care, including scien- urgent need for diabetes care research, including fund-
tists, researchers, clinicians, governments, and the public ing, advocacy, translation of available research into
to turn up the heat on diabetes to 212°.1 Why 212°? Two clinical practice, and providing excellent biopsycho-
hundred twelve degrees Fahrenheit is the point at which social clinical care to patients with diabetes. NPs have
water boils, creating movement and energy. a significant footprint in chronic disease management,
Dr. Schatz suggested if the lives of patients with including diabetes, and are therefore well positioned
diabetes mellitus are going to improve, a collective to assist in addressing the urgent need for holistic
sense of urgency is needed to address all aspects of diabetes care.
Keywords: diabetes distress, diabetes treatment, emotional burden

www.tnpj.com The Nurse Practitioner • August 2018 23

Copyright © 2018 Wolters Kluwer Health, Inc. All rights reserved.

 The emotional burden of diabetes: A look at diabetes distress

The psychosocial spectrum of diabetes care is vast managing the disease.8 Patients with diabetes are highly
and often includes various challenges for patients, such individual, and coping with the disease state is likewise
as difficulty coping with a diabetes diagnosis, mood often personalized. Factors such as resilience, beliefs
and behavioral factors, regimen adherence, and other about health and spirituality, access to social support,
barriers to care. Literature on these subjects is now and socioeconomic status may all play a role in a pa-
becoming more multidisciplinary and can be found tient’s ability to cope with a diagnosis of diabetes.
in various journals. The purpose of this article is to Many routine factors of diabetes management may
discuss a psychological condition, diabetes distress, be distressing to patients. The daily blood glucose
which adversely affects diabetes outcomes but is less monitoring, medication regimens, diet and lifestyle
commonly found in literature geared toward NPs. changes, surveillance and advice from loved ones, worry
Delineating the difference between what appears about hypoglycemia, and anxiety over past and future
to be clinical depression or subclinical depression and A1C results can be distressing to some patients. This
diabetes distress in patients with diabetes has evolved distress can go beyond the ability to control the re-
since the 1990s.2 Depression, which is typically mea- sponse with the patient’s usual coping mechanisms,
sured in clinical studies by self-report tools such as the ultimately affecting overall adherence to self-care plans.
Patient Health Questionnaire (PHQ-9) or Center for Poor adherence is typically associated with both psy-
Epidemiologic Studies Depression (CES-D) scale, chological problems and adverse disease outcomes.9,10
commonly manifests as depressed mood, difficulty Diabetes distress is not depression; however, the
concentrating, disordered eating, fatigue, irritability, ADA guidelines now recommend screening for diabetes
and disordered sleeping.3,4 distress just like depression (see Symptoms of depression
The ADA recommends routine screening for de- vs. diabetes distress).5 In some of the earlier diabetes
pression in patients with diabetes using standardized/ distress work, Fisher and colleagues found that “most
validated tools at an initial visit, at periodic intervals, patients with diabetes and high levels of depressive
and when changes in life circumstances, disease, or symptoms are not clinically depressed” but rather the
treatment occur.5 The PHQ-9 and Beck Depression symptomatology was “more reflective of general emo-
Inventory are often used in clinical practice for identify- tional and diabetes-specific distress.”10
ing depression. These tools are embedded in some elec- Later echoing this, Gonzalez and colleagues sug-
tronic medical records for easy access.6 Depression has gested that a recurring problem in diabetes care has
been associated with poor diabetes self-management been labeling emotional distress in diabetes as major
and increased incidence of diabetes complications and depressive disorder (MDD), when in fact, MDD and
mortality and should therefore be treated if present.7 diabetes distress are distinct constructs.2 Diabetes-
In contrast with depression, diabetes distress refers related distress has a greater impact on diabetes out-
to psychological aspects of diabetes, including the comes than depression. Therefore, antidepressants are
emotional burdens, stress, and worries associated with unlikely to help, whereas identification and manage-
ment of diabetes-related distress may be beneficial.
Symptoms of depression vs. diabetes distress4,9,16
Psychologist William Polonsky and colleagues cor-
related domains of psychosocial adjustment unique to
Depression Diabetes distress patients with diabetes (samples included both type 1
Symptoms include: Worry or stress resulting diabetes mellitus [T1DM] and type 2 diabetes mellitus
• Depressed mood from: [T2DM]) with the degrees of diabetes-related dis-
• Difficulty concentrating • Glucose readings
tress.11,12 Diabetes distress is measured predominantly
• Disordered eating • Diabetes medication/
regimen
using one of two tools: the Problem Areas in Diabetes
• Fatigue
• Lifestyle adherence (PAID) survey developed in 1995, or the Diabetes Dis-
• Headaches
• Advice from others tress Scale (DDS), which addresses some of the PAID’s
• Irritability
• Disordered sleeping • Risk of hypoglycemia limitations.11,12
• Future health and poten- Discussions remain ongoing about which tool to
tial complications from use in which diabetes populations. Recent literature out
diabetes
of Australia favors the PAID tool as a measure of general
• Societal intolerance
diabetes distress and the DDS to measure emotional

24 The Nurse Practitioner • Vol. 43, No. 8 www.tnpj.com

Copyright © 2018 Wolters Kluwer Health, Inc. All rights reserved.

 The emotional burden of diabetes: A look at diabetes distress

burden and regimen-related distress.13 Alternatively, overwhelmed by the demands of living with diabetes
Schmitt and colleagues compared the two tools, con- and felt that they are failing with their diabetes
cluding with equal support for either PAID or DDS.14 routines.18
Current work is underway to delineate T1DM distress A positive short screen should prompt the clini-
compared with T2DM.15 cian to administer to the full DDS-17 tool. The full
The author prefers the DDS for three reasons: a DDS-17 tool is written at approximately a seventh-
two-item diabetes distress screening tool is available, grade reading level, is applicable to both genders, and
personal clinical experience with DDS, and the DDS has been tested in several major ethnic groups (see
provides a measure of provider contribution to the behavioraldiabetes.org for complete scales).12 Overall,
patient’s distress, which is important from a quality the incidence of severe diabetes distress has been
perspective. Therefore, for the purpose of this article, reported in between 18% and 46% of adults with
the remaining focus will be on the DDS. diabetes, with patients with T2DM having a higher
incidence of diabetes distress in some studies.13
■ Diabetes distress themes: Incidence and screening
The Diabetes Attitudes, Wishes and Needs (DAWN) ■ Scoring of diabetes distress
study provided a significant contribution to the diabetes Scoring of the DDS two-item screening tool is consid-
distress and psychosocial diabetes literature base. An ered positive when a patient’s average score is 3 or
international group of patients with diabetes and greater.20 According to the author of the tool, the full
healthcare providers—both physicians and nurses— 17-item DDS uses the following cut points: little to no
were queried specifically about their attitudes and what distress is indicated when the patient’s total score is
they felt to be their needs and wishes about diabetes and lower than 2; moderate distress is indicated with a total
diabetes care.16 Themes emerged that were consistent score of 2.0 to 2.9; and high/severe distress is indicated
with a finding of diabetes distress, including patient with total scores of 3.0 or higher.20
concerns regarding self-management (diet, lifestyle Questions on the full DDS are categorized based
adherence), fear of complications, fear of insulin injec- on the scoring sheet to reflect both a composite (over-
tions and associated hypoglycemia, complicated regi- all) score and distinct domain scores. The distinct
mens, social and psychological burdens, financial categories, or domains, of diabetes distress include
barriers, self-blame, anxiety, and helplessness.16 emotional distress, provider distress, regimen distress,
Providers in the study reported negative attitudes and interpersonal distress.20,21 There is potential for a
toward insulin, including the perception that insulin patient to show only moderate distress on the whole
was undesirable to patients, too difficult to dose, and scale, yet score high distress in a particular domain.
too time consuming for providers to manage.16 The Therefore, it is important to look at the scale’s indi-
Diabetes Attitudes, Wishes and Needs Second Study vidual domain scores.
(DAWN2)—a study specifically aimed at improving
the understanding of unmet psychosocial needs of ■ Interventions for diabetes distress
patients with diabetes—further confirmed the psy- Interventions aimed at improving diabetes distress
chological impact of diabetes in addition to identifying depend somewhat on the domain of distress but are
gaps around psychosocial and self-management edu- largely anchored in diabetes education and a support-
cation and support.17 ive professional and social atmosphere.
Initial screening for diabetes distress can be ac-
complished with the 2-Item Diabetes Distress Screen- Regimen distress
ing Scale (DDS2), a shortened version of the full Regimen distress includes themes around the day-to-
screening tool.18,19 The diabetes distress scales are copy- day management of diabetes, including diet, physical
righted by the Behavioral Diabetes Institute, which is activity, glucose testing, and medication regimens.12,20
available in many languages, and according to the web- One group with specific needs is the patient with
site, available free of charge to nonprofit organizations T2DM in need of insulin. Diabetes is a progressive
for use in clinical care and research (behavioraldiabe- disease that often requires insulin support for glucose
tes.org). The short screen asks patients to score the control as the disease progresses. Society embraces
degree (over the past month) that they have felt success. Unfortunately, insulin is commonly perceived

www.tnpj.com The Nurse Practitioner • August 2018 25

Copyright © 2018 Wolters Kluwer Health, Inc. All rights reserved.

 The emotional burden of diabetes: A look at diabetes distress

by patients as a symbol of failure and is often associ- Diabetes DSME/S, whether in-group or individual
ated with many myths. settings, can provide critical empowerment to patients
Tanenbaum and colleagues used focus group-based with heavy emotional burdens related to their diag-
qualitative research to find high levels of regimen-related nosis and treatment. Similarly, encouraging patients
to attend lay seminars at senior or
community centers can also provide
NPs should practice self-reflection on social support and knowledge
attitudes toward diabetes to avoid being a around the disease process.
source of provider-related diabetes distress. Because DSME/S is shown to im-
prove outcomes in diabetes and is the
standard of care, removing barriers
distress among patients with T2DM requiring insulin. to access is important.5,22 Clustering same-day diabetes
These findings are in addition to other observed themes, education appointments with provider appointments
including difficulties around navigating the healthcare and shared medical appointments has shown promise
system, injecting oneself with insulin, and fluctuations in appointment adherence.24 Telehealth education visits
in glucose levels.21 are also a good option. Having a certified diabetes edu-
NPs should acknowledge and explore patients’ cator on location can help reduce the distress of travel-
fears and worries about insulin, including the potential ing to unfamiliar locations. Such alternative models for
for, avoidance of, and treatment of hypoglycemia. education and support may be particularly helpful for
Many patients require a combination of oral agents rural practices or those with high “no show” rates.
and injectables. This medication regimen coupled with
frequent glucose monitoring can become both psy- Provider-related distress
chologically and financially overwhelming. Diabetes Providers can also be a source of patient distress.
self-management education and support (DSME/S) Patients experiencing provider-related distress may not
classes are designed specifically to improve patient perceive that they have confident knowledge about the
understanding of medication uses and proper admin- disease or their plan of care, may feel they have unclear
istration techniques, along with education around instructions, or may feel their provider is difficult to
self-management and coping with the diagnosis and access or lacks empathy.12,20 Several contributing factors
living with diabetes.22 to provider-related distress include clinical inertia,
worry about office visit time commitment, advanced
Interpersonal and emotional distress disease management deficit, and prevalent negative
Interpersonal distress themes center on the desired level attitudes around insulin prescribing, dosing/titrating,
of support from friends and family as well as this sup- and ongoing management.9
port system’s general lack of understanding of the dif- Provider biases around obesity, a common comor-
ficulties of living with diabetes.12,20 Relationships can bidity with T2DM, can also stress the provider-patient
become tense as loved ones offer well-intentioned yet relationship. Such factors are not consistent with
unsolicited advice around food choices and activity Schatz’s call to urgency. NPs should practice self-re-
level (or lack thereof). Helping patients and their sup- flection on attitudes toward diabetes as well as diabetes
port systems openly discuss the degree of surveillance management skills to avoid being a source of provider-
and unsolicited advice can help set boundaries and related diabetes distress.
expectations. If the complexity of diabetes management is beyond
For instance, a loved one may be encouraged to ask, the NP’s comfort level, referral to a specialty NP, prefer-
“How would you like me to be involved in your diabetes ably a board-certified advanced diabetes management
care. Only if requested, or would you like gentle, loving clinician, diabetologist, or endocrinologist is appropri-
reminders?” Emotional distress can include feelings of ate while the NP acquires the necessary knowledge base.
anger, worry, and fear, a fatalistic view of diabetes, and
the overwhelming feeling that diabetes controls one’s ■ Coding
life.12,20 Self-efficacy at its very root is about one’s con- The ICD-10 does not include a code for diabetes dis-
fidence to effectively navigate a particular situation.23 tress. The standard in coding is to code the diabetes

26 The Nurse Practitioner • Vol. 43, No. 8 www.tnpj.com

Copyright © 2018 Wolters Kluwer Health, Inc. All rights reserved.

 The emotional burden of diabetes: A look at diabetes distress

first, such as E11.9 (T2DM without complications), 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
E11.65 (T2DM with hyperglycemia), or other appli- in specialized outpatient clinics. BMC Health Serv Res. 2010;10:235.
cable diabetes codes, followed by a code reflecting the 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.
emotional burden of diabetes distress, such as Z73.0
5. American Diabetes Association. Standards of medical care in diabetes—2018.
Burnout; Z73.9 Problem related to life management Diabetes Care. 2018;41:S1-S159.
difficulty; or R45.3 Apathy.25 Clinical judgment is nec- 6. Beck AT, Ward CH, Mendelson M, Mock J, Erbaugh J. An inventory for
measuring depression. Arch Gen Psychiatry. 1961;4(6):561-571.
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■ Future implications 8. Fisher L, Hessler D, Glasgow RE, et al. REDEEM: a pragmatic trial to reduce
Satisfaction surveys have been part of hospital care for diabetes distress. Diabetes Care. 2013;36(9):2551-2558.
9. Skovlund SE, Peyrot M. The Diabetes Attitudes, Wishes, and Needs (DAWN)
years. Similar surveys are now surfacing in outpatient program: a new approach to improving outcomes of diabetes care. Diabetes
care. While “satisfaction” does not necessarily equate Spectr. 2005;18(3):136-142.
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to quality, implications for quality improvement based patients with type 2 diabetes: not just a question of semantics. Diabetes Care.
on diabetes distress categories still abound. For in- 2007;30(3):542-548.
11. Polonsky WH, Anderson BJ, Lohrer PA, et al. Assessment of diabetes-related
stance, if provider-related distress is high, then the distress. Diabetes Care. 1995;18(6):754-760.
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development of the Diabetes Distress Scale. Diabetes Care. 2005;28(3):626-631.
define the provider-related problems.
13. Fenwick EK, Rees G, Holmes-Truscott E, Browne JL, Pouwer F, Speight J.
Is the problem isolated to just a few providers, or What is the best measure for assessing diabetes distress? A comparison of
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burden, or interpersonal-related distresses are fre- 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
quent, systems may need to evaluate the degree of (PAID) and the Diabetes Distress Scale (DDS). Diabet Med. 2016;33(6):835-843.
“support” toward self-efficacy and self-management 15. Fisher L, Hessler D, Polonsky W, Strycker L, Masharani U, Peters A. Diabetes
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Psychosocial care and support can be challenging to
19. Hessler D, Fisher L, Glasgow RE, et al. Reductions in regimen distress are
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a milieu of trust in which a patient is willing to disclose
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personal struggles can take time—not only in the pres- clinically meaningful?: establishing cut points for the Diabetes Distress
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reflection techniques around diabetes management
skills will promote the translation of diabetes distress Karla K. Giese is an NP, diabetes specialist, board certified in advanced diabetes
management, and director of diabetes quality for the AADE Accredited Diabetes
literature into NP clinical practice. Education Program at Lovelace Medical Group/Southwest Medical Associates,
Albuquerque, NM, and an assistant professor of Nursing at Liberty University,
REFERENCES
Lynchburg, Va.
1. Schatz D. 2016 presidential address: diabetes at 212°-confronting the invis-
ible disease. Diabetes Care. 2016;39(10):1657-1663. The author has disclosed no financial relationships related to this article.
2. Gonzalez JS, Fisher L, Polonsky WH. Depression in diabetes: have we been
missing something important? Diabetes Care. 2011;34(1):236-239. DOI-10.1097/01.NPR.0000541470.61913.1c

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