Introduction
Complex environmental, social, behavioral, and emotional factors, known as psychosocial
factors, influence living with diabetes, both type 1 and type 2, and achieving satisfactory
medical outcomes and psychological well-being. Thus, individuals with diabetes and
their families are challenged with complex, multifaceted issues when integrating diabetes
care into daily life. To promote optimal medical outcomes and psychological well-being,
patient-centered care is essential, defined as “providing care that is respectful
of and responsive to individual patient preferences, needs, and values and ensuring
that patient values guide all clinical decisions” (1). Practicing personalized, patient-centered
psychosocial care requires that communications and interactions, problem identification,
psychosocial screening, diagnostic evaluation, and intervention services take into
account the context of the person with diabetes (PWD) and the values and preferences
of the PWD.
This article provides diabetes care providers with evidence-based guidelines for psychosocial
assessment and care of PWD and their families. Recommendations are based on commonly
used clinical models, expert consensus, and tested interventions, taking into account
available resources, practice patterns, and practitioner burden. Consideration of
life span and disease course factors (Fig. 1) is critical in the psychosocial care
of PWD. This Position Statement focuses on the most common psychological factors affecting
PWD, including diabetes distress and psychological comorbidities, while also considering
the needs of special populations and the context of care.
Figure 1
Psychosocial care for PWD: life and disease course perspectives. *With depressed mood,
anxiety, or emotion and conduct disturbance. **Personality traits, coping style, maladaptive
health behaviors, or stress-related physiological response. ***Examples include changing
schools, moving, job/occupational changes, marriage or divorce, or experiencing loss.
GENERAL CONSIDERATIONS IN PSYCHOSOCIAL CARE
Recommendations
Psychosocial care should be integrated with collaborative, patient-centered medical
care and provided to all people with diabetes, with the goals of optimizing health
outcomes and health-related quality of life. A
Providers should consider an assessment of symptoms of diabetes distress, depression,
anxiety, and disordered eating and of cognitive capacities using patient-appropriate
standardized/validated tools at the initial visit, at periodic intervals, and when
there is a change in disease, treatment, or life circumstance. Including caregivers
and family members in this assessment is recommended. B
Consider monitoring patient performance of self-management behaviors as well as psychosocial
factors impacting the person’s self-management. E
Consider assessment of life circumstances that can affect physical and psychological
health outcomes and their incorporation into intervention strategies. E
Addressing psychosocial problems upon identification is recommended. If an intervention
cannot be initiated during the visit when the problem is identified, a follow-up visit
or referral to a qualified behavioral health care provider may be scheduled during
that visit. E
Practitioners should identify behavioral/mental health providers, ideally those who
are knowledgeable about diabetes treatment and the psychosocial aspects of diabetes,
with whom they can form alliances and use for referrals (Table 1) in the psychosocial
care of PWD. Ideally, psychosocial care providers should be embedded in diabetes care
settings. Shared resources such as electronic health records, management data, and
patient-reported information regarding adjustment to illness and life course issues
facilitate providers’ capacity to identify and remediate psychosocial issues that
impede regimen implementation and improve diabetes management and well-being. Care
models that take into account cultural influences, as well as personal, family, and
community resources, and tailor care to the core values and lifestyle of the individual
are more likely to be successful (2). Regardless of how the diabetes care team is
constituted, the PWD is central to the care process. If a PWD cannot act on behalf
of him/herself in the care process, a support person needs to be identified to participate
in treatment decisions and facilitate disease management. It is also important that
providers enlist members of the patient’s social support network to aid in the identification,
prevention, and resolution of psychosocial problems.
Table 1
Situations that warrant referral of a person with diabetes to a mental health provider
for evaluation and treatment
• If self-care remains impaired in a person with diabetes distress after tailored
diabetes education
• If a person has a positive screen on a validated screening tool for depressive symptoms
• In the presence of symptoms or suspicions of disordered eating behavior, an eating
disorder, or disrupted patterns of eating
• If intentional omission of insulin or oral medication to cause weight loss is identified
• If a person has a positive screen for anxiety or FoH
• If a serious mental illness is suspected
• In youth and families with behavioral self-care difficulties, repeated hospitalizations
for diabetic ketoacidosis, or significant distress
• If a person screens positive for cognitive impairment
• Declining or impaired ability to perform diabetes self-care behaviors
• Before undergoing bariatric surgery and after if assessment reveals an ongoing need
for adjustment support
Medical management of diabetes requires patient implementation of a treatment regimen.
Thus, psychosocial factors impacting self-care such as diabetes distress (burdens
of diabetes and its treatment, worries about adverse consequences), lack of social
and economic resources, and other psychological states (e.g., depression, anxiety,
eating disorders, cognitive impairment) (3), as well as health literacy and numeracy,
should be monitored. To detect problems early and prevent health deterioration, all
PWD should be evaluated at the initial visit and on a periodic basis going forward
even if there is no patient specific indication (4). In addition, evaluation is indicated
during major disease and life transitions, including the onset of complications and
significant changes in treatment (i.e., initiation of insulin pump or other forms
of intensification) or life circumstances (i.e., living arrangements, job, and significant
social relationships), with prospective monitoring for 6 months (a period of increased
risk) (5).
All care providers should include queries about well-being in routine care. Standardized
and validated tools (Table 2) for psychosocial monitoring, assessment, and diagnosis
can be used by providers in a stepped sequence with positive findings leading to further
evaluation, starting with informal verbal inquiries for monitoring followed by questionnaires
for assessment (e.g., PHQ-9) and finally by structured interviews for diagnosis (e.g.,
Structured Clinical Interview for the DSM-V). For example, the diabetes care provider
can ask whether there have been changes in mood during the past 2 weeks or since their
last visit. Further, providers should consider asking whether there are new or different
barriers to treatment and self-management, such as feeling overwhelmed or stressed
by diabetes or other life stressors. Positive responses can be probed with additional
questions and/or use of standardized measures to inform assessment and guide the selection
of appropriate interventions.
Table 2
Selected measures for the evaluation of psychosocial constructs in the clinical setting
Topic area
Measure title
Citations
Description
Validated population
Diabetes-related distress
Problem Areas in Diabetes (PAID)
Polonsky WH, Anderson BJ, Lohrer PA, et al. Assessment of diabetes-related distress.
Diabetes Care 1995;18:754–760
20-item measure of diabetes-specific distress measuring emotional distress and burden
associated with diabetes
Adults with type 1 and type 2 diabetes
Welch G, Weinger K, Anderson B, Polonsky WH. Responsiveness of the Problem Areas in
Diabetes (PAID) questionnaire. Diabet Med 2003;20:69–72
Diabetes Distress Scale (DDS)
Polonsky WH, Fisher L, Earles J, et al. Assessing psychosocial stress in diabetes:
development of the Diabetes Distress Scale. Diabetes Care 2005;28:626–631
17-item questionnaire measuring diabetes-specific distress in four domains: emotional
burden, diabetes interpersonal distress, physician-related distress, and regimen-related
distress
Adults with type 1 and type 2 diabetes
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;35:259–64 (39)
PAID–Pediatric Version (PAID-Peds)
Markowitz JT, Volkening LK, Butler DA, Laffel LM. Youth-perceived burden of type 1
diabetes: Problem Areas in Diabetes Survey-Pediatric Version (PAID-Peds). J Diabetes
Sci Technol 2015;9:1080–1085
20-item measure of diabetes burden
Youth (ages 8–17 years) with type 1 diabetes
PAID–Teen Version
Weissberg-Benchell J, Antisdel-Lomaglio, J. Diabetes-specific emotional distress among
adolescents: feasibility, reliability, and validity of the problem areas in diabetes-teen
version. Pediatr Diabetes 2011;12:341–344
26-item questionnaire measuring perceived burden of diabetes
Adolescents (ages 11–19 years) with diabetes
PAID–Parent Revised version (PAID-PR)
Markowitz JT, Volkening LK, Butler DA, Antisdel-Lomaglio JH, Anderson BJ, Laffel LM.
Re-examining a measure of diabetes-related burden in parents of young people with
type 1 diabetes: the Problem Areas in Diabetes Survey–Parent Revised version (PAID-PR).
Diabet Med 2012;29:526–530
18-item questionnaire assessing perceived parental burden of diabetes
Parents of children and adolescents (ages 8–18 years) with type 1 diabetes
Depression
Patient Health Questionnaire (PHQ-9)
Spitzer RL, Williams JB, Kroenke K, et al. Utility of new procedure for diagnosis
mental-disorders in primary-care: the PRIME-MD 1000 Study. JAMA 1994;272:1749–1756
9-item measure of depressive symptoms (corresponding to criteria for major depressive
disorder)
Adults
Beck Depression Inventory–II (BDI-II)
Beck AT, Steer RA, Brown GK. Manual for the Beck Depression Inventory-II, 2nd ed.
San Antonio, TX, Harcourt, Brace & Company, 1996
21-item questionnaire evaluating somatic and cognitive symptoms of depression
Adults
Child Depression Inventory (CDI) (current edition is CDI-2)
Kovacs, M. The Children’s Depression Inventory (CDI): Technical Manual Update. North
Tonawanda, NY, Multi-Health Systems, 2003
27-item measure assessing depressive symptoms using child and parent report
Youth (ages 7–17 years)
Geriatric Depression Scale (GDS)
Sheikh JI, Yesavage JA. Geriatric Depression Scale (GDS): recent evidence and development
of a shorter version. Clinical Gerontologist 1986;5:165–172
15-item measure was developed to assess depression in older adults
Adults (ages 55–85 years)
Eating disorders
Eating Disorders Inventory–3 (EDI-3)
Garner DM. Eating Disorder Inventory-3: Professional Manual. Odessa, FL, Psychological
Assessment Resources, 2004
2 interview and self-report surveys aimed at the measurement of psychological traits
or symptom clusters relevant to the development and maintenance of eating disorders
Females (ages 13–53 years)
Diabetes Eating Problems Survey (DEPS-R)
Markowitz JT, Butler DA, Volkening LK, Antisdel JE, Anderson BJ, Laffel LM. Brief
screening tool for disordered eating in diabetes: internal consistency and external
validity in a contemporary sample of pediatric patients with type 1 diabetes. Diabetes
Care 2010;33:495–500
16-item self-report measure designed to assess diabetes-specific eating issues
Youth (ages 13–19 years) with type 1 diabetes
Diabetes Treatment and Satiety Scale (DTSS-20)
Young-Hyman D, Davis C, Grigsby C, Looney S, Peterson C. Development of the Diabetes
Treatment and Satiety Scale: DTSS-20 (Abstract). Diabetes 2011;60(Suppl. 1):A218
20-item self-report measure that assesses perception of satiety and fullness in the
context of food intake, physical activity, medication dosing, and glycemic levels
Youth (ages 10–17 years) with type 1 diabetes
Health literacy and numeracy
General Health Numeracy Test (GHNT)
Osborn CY, Wallston KA, Shpigel A, Cavanaugh K, Kripalani S, Rothman RL. Development
and validation of the General Health Numeracy Test (GHNT). Patient Educ Couns 2013;91:350–356
21-item self-report questionnaire designed to assess patient level of understanding
of the use of numbers in medications and health
Adults
Diabetes Numeracy Test (DNT)
Huizinga MM, Elasy TA, Wallston KA, et al. Development and validation of the Diabetes
Numeracy Test (DNT). BMC Health Ser Res 2008;1:96
5-, 15-, and 43-item word problem–based test to assess understanding of tables, graphs,
and figures specific to the management of diabetes
Adults (ages 18–80 years)
Brief Health Literacy Scale (BHLS)
Wallston KA, Cawthon C, McNaughton CD, Rothman RL, Osborn CY, Kripalani S. Psychometric
properties of the Brief Health Literacy Screen in clinical practice. J Gen Intern
Med 2014;29:119–126
3-item measure read aloud to patients in an outpatient and emergency department setting
to assess understanding of health concepts
Adults
Self-care efficacy
Diabetes self-efficacy
Ritter PL, Lorig K, Laurent D. Characteristics of the Spanish- and English-language
self-efficacy to manage diabetes scales. Diabetes Educ 2016;42:167–177
8-item self-report scale designed to assess confidence in performing diabetes self-care
activities
Adults
Self-efficacy for diabetes management
Iannotti RJ, Schneider S, Nansel TR, et al. Self-efficacy, outcome expectations, and
diabetes self-management in adolescents with type 1 diabetes. J Dev Behav Pediatr
2006;27:98–105 (26)
10-item self-report self-efficacy scale
Adolescents (ages 10–16 years) with type 1 diabetes
Anxiety
State-Trait Anxiety Inventory for Children (STAIC)
Spielberger CD, Edwards CD, Lushene R, Monturi J, Plotzek D. State-Trait Anxiety Inventory
for Children Professional Manual. Menlo Park, CA, Mind Garden, Inc., 1973
40 items on two dimensions—trait and state anxiety
Youth with and without type 1 diabetes
Beck Anxiety Inventory (BAI)
Beck AT, Steer RA. Beck Anxiety Inventory Manual. San Antonio, TX, The Psychological
Corporation, 1993
21 items assessing self-reported anxiety
Adults
Hypoglycemia Fear Survey-II (HFS-II)
Cox DJ, Irvine A, Gonder-Frederick L, Nowacek G, Butterfield J. Fear of hypoglycemia:
quantification, validation, and utilization. Diabetes Care 1987;10:617–621 (63)
33 items assessing behavioral and worry dimensions of hypoglycemia in adults
Adults with type 1 diabetes
Gonder-Frederick LA, Schmidt KM, Vajda KA, et al. Psychometric properties of the Hypoglycemia
Fear Survey-II for adults with type 1 diabetes. Diabetes Care 2011;34:801–806 (71)
Children’s Hypoglycemia Index (CHI)
Kamps JL, Roberts MC, Varela RE. Development of a new fear of hypoglycemia scale:
preliminary results. J Pediatr Psychol 2005;30:287–291
Designed to assess FoH (25 items)
Youth (ages 8–16 years) with type 1 diabetes
Cognitive screening in older adults
Mini-Mental State Examination (MMSE)
Folstein MF, Folstein SE, McHugh PR. “Mini-mental” state: a practical method for grading
the cognitive state of patients for the clinician. J Psychiatr Res 1975;12:189–198
11-item (30-point) screen for cognitive impairment in adults
Adults (ages 18 – 100 years)
Crum RM, Anthony JC, Bassett SS, Folstein MF. Population-based norms for the Mini-Mental
State Examination by age and educational level. JAMA 1993;269:2386–2391
Telephone Interview for Cognitive Status (TICS)
Brandt J, Spencer M, Folstein M. The Telephone Interview for Cognitive Status. Neuropsychiatry
Neuropsychol Behav Neurol 1988;1:111–117
11-item measure assessing cognitive status by telephone
Adults (ages 60–98 years)
Brandt J, Folstein MF. Telephone Interview for Cognitive Status (TICS) Professional
Manual. Lutz, FL, Psychological Assessment Resources, 2003
Cognitive assessment toolkit
Cordell CB, Borson S, Boustani M, et al. Alzheimer's Association recommendations for
operationalizing the detection of cognitive impairment during the Medicare Annual
Wellness Visit in a primary care setting. Alzheimers Dement 2013;9:141–150
Designed for use during a medical office visit to screen for cognitive impairment
in older adults (includes informant interviews also)
Adults
Chronic pain
Short-form McGill Pain Questionnaire (SF-MPQ-2)
Dworkin RH, Turk DC, Revicki DA, et al. Development and initial validation of an expanded
and revised version of the Short-form McGill Pain Questionnaire (SF-MPQ-2). Pain 2009;144:35–42
22-item questionnaire designed to assess pain
Adults
Adherence to self-care
Summary of Diabetes Self-Care Activities (SDSCA)
Toobert DJ, Hampson SE, Glasgow RE. The Summary of Diabetes Self-Care Activities measure:
results from 7 studies and a revised scale. Diabetes Care 2000;23:943–950
11-item and expanded 25-item measure of diabetes self-care behaviors
Adults with type 1 and type 2 diabetes
Adherence to Refills and Medications Scale (ARMS-D)
Kripalani S, Risser J, Gatti ME, Jacobson TA. Development and evaluation of the Adherence
to Refills and Medications Scale (ARMS) among low-literacy patients with chronic disease.
Value Health 2009;12:118–123
11-item self-report questionnaire designed to assess the extent to which patients
take and refill their diabetes-related medications
Adults
Mayberry LS, Gonzalez JS, Wallston KA, Kripalani S, Osborn CY. The ARMS-D outperforms
the SDSCA, but both are reliable, valid, and predict glycemic control. Diabetes Res
Clin Pract 2013;102:96–104
Barriers to diabetes adherence
Mulvaney SA, Hood KK, Schlundt DG, et al. Development and initial validation of the
barriers to diabetes adherence measure for adolescents. Diabetes Res Clin Pract 2011;94:77–83
21-item self-report questionnaire designed to assess barriers to diabetes self-care
behaviors
Adolescents (ages 12–17 years) with diabetes
When referral is warranted (Table 1), formal diagnostic assessments and interviews
should be conducted by a qualified behavioral health provider familiar with the care
of PWD. Standardized, age- and literacy-appropriate assessment and diagnostic tools
should be used (Table 2). These established measures were selected from a wider literature
on the basis of the scientific rigor used in their development and the availability
of norms for clinical use. The recommendation of specific measures for clinical use
is beyond the scope of this statement. Care providers should implement interventions
to address the day-to-day problems of living with diabetes, particularly diabetes-related
distress related to self-management behaviors, as well as diabetes-related family
conflict (6–8). Support from a behavioral health provider may be effective when difficulties
are persistent. However, as soon as there is indication of a diagnosable psychological
condition, consultation and/or referral should be sought with a provider having the
appropriate mental health expertise. Standardized/validated intervention strategies
specific to PWD should be utilized whenever possible.
PSYCHOSOCIAL ISSUES IMPACTING DIABETES SELF-MANAGEMENT
Recommendations
People with diabetes should be evaluated and receive training until they attain competence
in diabetes self-care skills and the use of technologies at the time of diagnosis,
annually, if/when complications arise, and if/when transitions in care occur. The
diabetes care team is encouraged to directly and regularly assess these self-management
behaviors. B
Providers should consider the burden of treatment and patient levels of confidence/self-efficacy
for management behaviors as well as level of social and family support when making
treatment recommendations. E
While following treatment regimens consistently improves A1C (9–12), the impact is
modest. Multiple factors other than patient behavior affect diabetes treatment outcomes,
including adequacy of medical management, duration of diabetes, weight gain, and other
health-related (e.g., comorbid illness and concomitant medication) and social-structural
factors (e.g., poverty, access to care, health insurance coverage) (13–16). Therefore,
it is not appropriate to automatically attribute suboptimal A1C and adverse events
such as hypoglycemia (17) solely to self-management behaviors without their direct
assessment.
Provider communications with patients/families should acknowledge that multiple factors
impact glycemic management but also emphasize that following collaboratively developed
treatment regimens and recommended lifestyle changes can significantly improve disease
outcomes and well-being (14,18–20). Thus, the goal of provider–patient communication
should be to empower the PWD without blaming them for “noncompliance” when the outcomes
of self-management are not optimal.
The familiar term, noncompliance, denotes a passive, obedient role for PWD in “following
doctor’s orders” that is at odds with the active role PWD are asked to take in directing
the day-to-day planning, monitoring, evaluation, and problem-solving involved in diabetes
self-management (21). Patient perceptions about their own ability, or self-efficacy,
to self-manage diabetes are one important psychosocial factor related to improved
diabetes self-management and treatment outcomes in diabetes (22–26) and should be
a target of ongoing assessment and treatment planning.
Suboptimal self-management may be due to functional limitations (e.g., blindness,
problems with dexterity, low health literacy and numeracy), lack of appropriate diabetes
education, forgetting and disruption in routines, or psychosocial barriers, such as
inadequate family and/or social support, misinformation or inaccurate beliefs about
illness and treatment, emotional distress/depressive symptoms, or deficits in problem-solving
or coping skills (23,27–30). Therefore, individual needs should be evaluated so that
interventions can be tailored to the problem (31–35). Self-report measures are available
and can be used in most practice settings (see Table 2). Using a nonjudgmental approach
that normalizes periodic lapses in self-management may help minimize patients’ resistance
to reporting problems with self-management.
Making healthy food choices on a daily basis is among the most difficult aspects of
diabetes self-care (36). Current medical nutrition therapy guidelines promote flexible
and healthy eating patterns personalized to the individual rather than defining a
wide range of behaviors as dietary “nonadherence” (37). Self-monitoring of food intake
may help the individual with diabetes become more aware of their own eating patterns
while providing information that helps the registered dietitian nutritionist assist
with meal planning and develop personalized dietary recommendations. Through monitoring,
it is important to assess for disordered eating behaviors (see disordered eating behavior:
clinical and subclinical).
DIABETES DISTRESS
Recommendation
Routinely monitor people with diabetes for diabetes distress particularly when treatment
targets are not met and/or at the onset of diabetes complications. B
Diabetes distress is very common and is distinct from a psychological disorder (38–40).
The constant behavioral demands (medication dosing, frequency, and titration; monitoring
blood glucose, food intake and eating patterns, and physical activity) of diabetes
self-management and the potential or actuality of disease progression are directly
associated with reports of diabetes distress (39). Its prevalence is reported to be
18–45% with an incidence of 38–48% over 18 months (41). High levels of diabetes distress
significantly impact medication-taking behaviors and are linked to higher A1C, lower
self-efficacy, and poorer dietary and exercise behaviors (39,41,42). It may be helpful
to provide counseling regarding expected diabetes-related versus generalized psychological
distress at diagnosis and when disease state or treatment changes (43).
About one-third of adolescents with diabetes develop diabetes distress, which may
be associated with declines in self-management behaviors and suboptimal blood glucose
levels (44). Parents of children with type 1 diabetes are also prone to diabetes distress
(45), which could impact their ability to provide psychological and diabetes management
support for their child.
Diabetes distress should be routinely monitored (46) using patient-appropriate validated
measures (Table 2). If diabetes distress is identified, the person should be referred
for diabetes education to address areas of diabetes self-care that are most relevant
to the patient and have the most impact on diabetes outcomes. People whose self-care
remains impaired after tailored diabetes education should be referred by their care
team to a behavioral health provider for evaluation and treatment.
PSYCHOLOGICAL COMORBIDITIES
Prevalence of clinically significant psychopathology in PWD ranges across diagnostic
categories, and some diagnoses are considerably more common in PWD than in those without
the disease (47–52). Symptoms, both clinical and subclinical, that interfere with
the person’s ability to carry out diabetes self-management must be addressed.
Depression
Recommendations
Providers should consider annually screening all patients with diabetes and/or a self-reported
history of depression for depressive symptoms with age-appropriate depression screening
measures, recognizing that further evaluation will be necessary for individuals who
have a positive screen. B
Beginning at diagnosis of complications or when there are significant changes in medical
status, consider assessment for depression. B
Referrals for treatment of depression should be made to mental health providers with
experience using cognitive behavioral therapy, interpersonal therapy, or other evidence-based
treatment approaches in conjunction with collaborative care with the patient’s diabetes
treatment team. A
History of depression, current depression, and antidepressant medication use are risk
factors for the development of type 2 diabetes, especially if the individual has other
risk factors such as obesity and family history of type 2 diabetes (53–55).
Elevated depressive symptoms and depressive disorders affect one in four patients
with type 1 or type 2 diabetes (47). Thus, routine screening for depressive symptoms
is indicated in this high-risk population including people with prediabetes (particularly
those who are overweight), type 1 and/or type 2 diabetes, gestational diabetes mellitus,
and postpartum diabetes. Regardless of diabetes type, women have significantly higher
rates of depression than men (56).
Routine monitoring with patient-appropriate validated measures (Table 2) can help
to identify whether referral is warranted. Remission of depressive symptoms or disorder
in adult patients suggests the need for ongoing monitoring of depression recurrence
within the context of routine care (53).
Integrating mental and physical health care can improve outcomes. The mental health
provider should be incorporated into the diabetes treatment team when a patient is
in psychological therapy (talk therapy) (57). Incorporation of a physical activity
regimen into routine self-management has also been shown to improve the health and
mental well-being of PWD (58,59). Please refer to the Position Statement of the American
Diabetes Association (ADA) on physical activity/exercise and diabetes (60) for additional
information.
Anxiety Disorders
Recommendations
Consider screening for anxiety in people exhibiting anxiety or worries regarding diabetes
complications, insulin injections or infusion, taking medications, and/or hypoglycemia
that interfere with self-management behaviors and in those who express fear, dread,
or irrational thoughts and/or show anxiety symptoms such as avoidance behaviors, excessive
repetitive behaviors, or social withdrawal. Refer for treatment if anxiety is present.
B
People with hypoglycemia unawareness, which can co-occur with fear of hypoglycemia,
should be treated using Blood Glucose Awareness Training (or other evidence-based
similar intervention) to help re-establish awareness of hypoglycemia and reduce fear
of hypoglycemia. A
Anxiety symptoms and diagnosable disorders (e.g., generalized anxiety disorder [GAD],
body dysmorphic disorder, obsessive compulsive disorder [OCD], specific phobias, and
posttraumatic stress disorder [PTSD]) are common in PWD (61); the Behavioral Risk
Factor Surveillance System estimated the lifetime prevalence of GAD to be 19.5% in
people with either type 1 or type 2 diabetes (62). Common diabetes-specific concerns
include fears related to hyperglycemia (63,64), not meeting blood glucose targets
(61), and insulin injections or infusion (65). General anxiety is a predictor of injection-related
anxiety and associated with fear of hypoglycemia (FoH) (64,66).
Preoccupation with an imagined defect in appearance associated with having diabetes
that interferes with social, occupational, or other important areas of function may
reflect body dysmorphic disorder (51). When ideas and symptoms (e.g., perceived deficits
in strength, attractiveness, and sexual function) do not reach the level of clinical
diagnosis, identification of these beliefs provides a context for provider education
about disease processes, reframing disease processes as distinct from the emotional
response to having diabetes and questioning the inevitability of health decline. Onset
of complications presents another critical point where these thoughts/beliefs can
occur and may require re-education and disease-based counseling (67).
If the PWD exhibits excessive diabetes self-management behaviors well beyond what
is prescribed or needed to achieve glycemic targets, reports repetitive negative thoughts
about inability to prevent poor health outcomes, and/or has related thoughts and behaviors
that interfere with other functions of daily living, the PWD may be experiencing symptoms
of OCD (68). OCD symptoms can represent generalized anxiety or be diabetes specific,
and referral to a mental health professional (such as a psychiatrist) familiar with
OCD treatment should be considered, especially if diabetes re-education does not prove
effective in reducing obsessive thoughts, behaviors, or feelings of general anxiety.
Caution should be exercised in diagnosing OCD-like symptoms, as regimen behaviors
contain similar characteristics, such as repetition, and are aimed at achieving control
over a perceived threat.
FoH and hypoglycemia unawareness often co-occur, and interventions aimed at treating
one often benefit both (69). FoH may explain avoidance of behaviors associated with
lowering glucose such as increasing insulin doses or frequency of monitoring. If FoH
is identified and a person does not have symptoms of hypoglycemia, a structured program,
Blood Glucose Awareness Training, delivered in routine clinical practice can improve
A1C, reduce the rate of severe hypoglycemia, and restore hypoglycemia awareness (70,71).
Such improvements in disease state have been shown to reduce diabetes distress and
improve psychological well-being (69,72,73).
Occurrence of severe hypoglycemia has been shown to be associated with PTSD and PTSD-like
and panic disorder symptoms (74,75). The potential for increased prevalence of PTSD
and panic disorder in this population, though not well studied, is intuitive given
the potentially life-threatening nature of the disease, particularly for those who
use exogenous insulin. Given that potential stimuli for PTSD-like symptoms are recurrent
for PWD, PTSD should be considered among other anxiety disorders.
Disordered Eating Behavior: Clinical and Subclinical
Recommendations
Providers should consider re-evaluating the treatment regimen of people with diabetes
who present with symptoms of disordered eating behavior, an eating disorder, or disrupted
patterns of eating. B
Consider screening for disordered or disrupted eating using validated screening measures
when hyperglycemia and weight loss are unexplained by self-reported behaviors related
to medication dosing, meal plan, and physical activity. In addition, a review of the
medical regimen is recommended to identify potential treatment-related effects on
hunger/caloric intake. B
Estimated prevalence of disordered eating behaviors and diagnosable eating disorders
in PWD varies (51,76,77). PWD with diagnosable eating disorders have high rates of
comorbid psychiatric disorders (78). People with type 1 diabetes and eating disorders
have high rates of diabetes distress and FoH (79). For people with type 1 diabetes,
insulin omission causing glycosuria in order to lose weight is the most commonly reported
disordered eating behavior (80,81), and in people with type 2 diabetes, bingeing (excessive
food intake with an accompanying sense of loss of control) is most commonly reported.
For people with type 2 diabetes treated with insulin, intentional omission is also
frequently reported (82). Binge eating disorder has been found to be more likely in
PWD than in the nondiabetes population, though studies of prevalence in specific diabetes
samples show varying rates (77,83). Other diagnostic categories of eating disorders
have a very low prevalence in PWD (77).
Potential confounders to the identification of symptoms of disordered eating are behaviors
that are prescribed as part of treatment (e.g., carbohydrate counting and calorie
restriction), behaviors or effects that are part of the disease (e.g., loss of control
over satiety regulation secondary to disease processes), and adverse effects of treatment
such as excessive hunger secondary to hypoglycemia. When evaluating symptoms of disordered
or disrupted eating in PWD, etiology and motivation for the behavior should be considered
(51,84). For example, missed insulin injections as a result of suboptimal self-management
differ significantly from intentional medication omission to produce weight loss.
Assessment and screening of disordered and disrupted eating requires methods that
account for treatment prescription, regimen behaviors, and diabetes-specific eating
problems attributable to disease processes (see Table 2). If night eating syndrome,
which is recurrent eating at night either after awakening from sleep or excessive
eating after dinner, is diagnosed, changes to the medication regimen are required
until maladaptive eating patterns can be modified (85). Adjunctive medication such
as glucagon-like peptide 1 receptor agonists (86) may not only help individuals meet
glycemic targets but also help regulate hunger and food intake, thus having the potential
to reduce uncontrollable hunger and bulimic symptoms.
Serious Mental Illness
Recommendations
Annually screen people who are prescribed atypical antipsychotic medications for prediabetes/diabetes.
B
Incorporate monitoring of diabetes self-care activities into treatment goals in people
with diabetes and serious mental illness. B
Studies of people with serious mental illness, particularly schizophrenia and other
thought disorders, show significantly increased rates of type 2 diabetes (87). People
with schizophrenia should be monitored for type 2 diabetes because of the known comorbidity.
Disordered thinking and judgment can be expected to make it difficult to engage in
behaviors that reduce risk factors for type 2 diabetes, such as restrained eating
for weight management. Individuals with major psychiatric disorders may need consistent
monitoring and oversight in their diabetes management, even if thought disorders remit.
Coordinated management of diabetes or prediabetes and serious mental illness is recommended
to achieve diabetes treatment targets. In addition, those taking olanzapine require
greater monitoring because of an increase in risk of type 2 diabetes associated with
this medication (88). Further study is needed to examine the association of other
antipsychotic medications with the onset of diabetes and glycemic management (48,89).
LIFE COURSE CONSIDERATIONS
PWD are diagnosed earlier (e.g., type 2 diabetes in childhood) (90) and living longer
(48). At each point in the life course, providers should consider which resources
and accommodations are needed to maximize disease outcomes and well-being. In particular,
identification of psychosocial factors influencing self-management are recommended
(e.g., culture, environment, social determinants, life roles and responsibilities,
and interpersonal dynamics, as well as person-based characteristics such as sex, race/ethnicity,
age, language, and socioeconomic status) (91).
Youth and Emerging Adults
Recommendations
At diagnosis and during routine follow-up care, consider assessing psychosocial issues
and family stresses that could impact diabetes management and provide appropriate
referrals to trained mental health professionals, preferably experienced in childhood
diabetes. E
Providers should consider monitoring youth and their parents about social adjustment
(peer relationships) and school performance to determine whether further evaluation
is needed. B
Consider assessing youth with diabetes for generic and diabetes-related distress starting
at about 7–8 years of age. B
Providers should encourage developmentally appropriate family involvement in diabetes
management tasks for children and adolescents, recognizing that premature transfer
of diabetes care to the child can result in poor self-management behaviors and deterioration
in glycemic management. A
Consider the inclusion of children in consent processes as early as cognitive development
indicates understanding of health consequences of behavior. E
Adolescents may have time by themselves with their care provider(s) starting at age
12 years. E
Providers should consider initiating discussions about care transition to an adolescent
medicine/transition clinic/adult provider no later than 1 year prior to starting the
transfer but preferably during early adolescence (∼14 years of age). E
Consider monitoring support from parents/caretakers of emerging adults with diabetes
and encouraging instrumental support (e.g., ordering supplies) and collaborative decision
making among caregivers. E
Starting at puberty, preconception counseling should be incorporated into routine
diabetes clinic visits for all females of childbearing potential. A
Consider counseling males, starting at puberty, regarding adoption of a healthy lifestyle
to reduce risk for sexual dysfunction. E
Given the rapid and dynamic nature of cognitive, developmental, and emotional changes
in youth, early detection of depression, anxiety disorders, eating issues, and learning
disabilities enhance the range and effectiveness of potential treatment options and
may help to minimize adverse effects on diabetes management and disease outcomes.
Because youth are dependent on social support systems (family and care providers)
and must eventually transition to independent diabetes self-management, their families
and related social networks need to be included in psychosocial assessment and treatment
(92–94). Parents of children with type 1 diabetes are prone to high rates of depression,
especially around the time of diagnosis (95,45). Persistence of parental depression
is associated with poorer child adjustment and diabetes management, especially in
younger children (96). Teaching family members effective problem-solving and conflict-resolution
skills can improve diabetes management and facilitate better glycemic management,
with the potential to reduce diabetes distress (92).
The adolescent years are known for disruption in diabetes care and communication between
family members, youth, and providers. Hallmarks of normal adolescence are increased
independence in decision making and turning to the peer group for validation of self-concept
and self-worth. Wishing to “fit in” may contribute to youth hiding or minimizing diabetes
care behaviors, thereby compromising management in the school setting (97). Cognitive
development and medical decision-making skills will impact a wide variety of risk-taking
behaviors and acceptance of self-management behaviors into daily life (98,99). Suboptimal
glycemic management should not automatically be attributed to adolescent rebellion
or lack of concern for health. A thorough age-appropriate psychosocial evaluation
and review of the medical regimen will suggest targets for modification to facilitate
self-management and well-being. If the adolescent is resistant to accepting support
from clinicians, family, and friends, the possibility of a more serious psychological
issue must be considered and evaluated.
Although legal and ethical issues of youth accepting or refusing treatment components
(e.g., an insulin pump) has not been extensively studied, these issues will undoubtedly
surface in the process of treatment decisions. Thus, the issue of treatment consent
must be considered when making regimen choices. Although cognitive abilities vary,
the ethical position often adopted is the “mature minor rule,” whereby children after
age 12 or 13 years who appear to be “mature” ought to have the right to consent or
to withhold consent to general medical treatment, except in cases in which refusal
would significantly endanger health (99). Emerging technologies, such as phone and
computer transmission of management data, can be useful in maintaining communication
of information through nonconfrontational channels and may provide a means for youth
to communicate directly with care providers as they transition to more independent
self-management (100).
Adolescents should have time by themselves with their care provider(s) starting at
age 12 years. Care should be taken to respect a teen/young adult’s privacy, as lack
of confidentiality is known to negatively affect adolescents’ health behavior, especially
regarding what are considered taboo or risky behaviors (101). Discussions with adolescents
should include questions about well-being in general, diabetes distress, and risk
behaviors (e.g., substance use and sexual activity) (102,103).
Preconception counseling for females during reproductive years increases knowledge
about diabetes-related risk, delays age of sexual initiation, decreases unprotected
sex, and improves preconception care and health (104,105). Less research is available
regarding sexual health for males, particularly in youth; however, males with diabetes
have a threefold increased risk of erectile dysfunction compared with men who do not
have diabetes (106,107). Open and factual discussions of these topics facilitate future
comfort in disclosing any concerns regarding sexual function. As less frequent attendance
to diabetes care visits is typical in the 18- to 30-year-old age-group, screening
regarding risk behaviors may be necessary at each visit.
Adults
Recommendations
In the care of adults with childbearing potential, include a discussion of life choices
that could be impacted by diabetes self-management, such as pregnancy and sexual functioning.
B
Providers should consider assessing for the presence of social support providers (e.g.,
family, peer support, lay diabetes educators/caretakers) who may facilitate self-management
behaviors, reduce burden of illness, and improve diabetes and general quality of life.
B
As people enter adulthood, establishment of a work role, intimate partnering, childbearing,
and parenting are typical life tasks (7). Living with and self-managing diabetes can
be expected to impact all life-course decisions for PWD and their partners. PWD may
question whether intimate partnering and biological parenthood are viable in the context
of their health status (108). High-quality relationships with and diabetes management
support from intimate partners improve diabetes-specific and general quality of life,
self-management behaviors, and metabolic outcomes (7). Partner roles may change if
functional ability is impacted by poor health outcomes (109). Sexual dysfunction is
often associated with depression and is routinely reported in clinical encounters
(see depression). In one study of individuals with type 1 diabetes, sexual dysfunction
was reported in as many as 50% of male patients (107). It is beyond the scope of these
guidelines to discuss psychosocial issues related to pregnancy and gestational diabetes
mellitus (see ref. 110).
Older Adults
Recommendations
Annual screening for early detection of mild cognitive impairment or dementia is indicated
for adults aged 65 years or older. B
Assessment of neuropsychological function and dementia using available standards for
conducting evaluations of dementia and age-related cognitive changes is recommended.
E
Within the primary care setting, a collaborative care model, incorporating structured
nurse care management intervention, is recommended for treatment of comorbid depression
in older adults with diabetes. A
Older adults with diabetes may be functional and cognitively intact and have significant
life expectancy, and they may not require psychosocial care beyond that of younger
adults. However, older adults may have issues particular to their age, such as advanced
disease, cognitive dysfunction, complex treatment regimens, comorbid health conditions,
functional impairment, limited social and financial resources, and depression (111).
Meeting glycemic targets may be impacted by unique nutritional requirements, physical
limitations (such as reduced sensation), memory loss, and low literacy and numeracy
skills. As older adults with diabetes may receive care support from family members
and staff at assisted living facilities, during hospitalizations, and in long-term
care facilities, the treatment regimen must consider context and caregiver capacities.
Support people (e.g., adult children, caretakers) who provide instrumental, social,
or emotional support for older adults with diabetes should be included in diabetes
management discussions and shared decision making.
Psychosocial targets for intervention include self-management support, access to health
care, and financial and emotional support, as well as day-to-day facilitation of physical
and mental well-being. Within the primary care setting, older adults with diabetes
and comorbid depression are likely to benefit from a collaborative care intervention
approach, which uses a nurse care manager supervised by a primary care physician and
psychiatrist (58,112,113).
Compared with older adults without diabetes, those with the disease are at an increased
risk of mild cognitive impairment (114). A meta-analysis of prospective and observational
studies in PWD showed a 73% increased risk of all types of dementia, a 56% increased
risk of Alzheimer dementia, and a 127% increased risk of vascular dementia compared
with individuals without diabetes (115). For detection of cognitive dysfunction, people
>65 years of age should receive cognitive screening annually within routine health
care, using recommended procedures and resources for practitioners (Table 2) (116–118).
Medical providers should address reversible contributors to cognitive dysfunction
including but not limited to depression, combinations of medications, thyroid disease,
and delirium (116).
PWD in Need of Special Considerations
People With Diabetes Complications and Functional Limitations
Recommendation
Care providers should consider routinely monitoring for chronic pain associated with
diabetes complications and its impact on quality of life. Appropriate pain management
interventions, including referral to a behavioral health provider for pain management
strategies, should be provided. B
Diabetes complications, including peripheral neuropathy, foot ulcers, limb amputation,
diabetic kidney disease, vision impairment, stroke, and heart attack, are associated
with depression, anxiety, reduced autonomy, role impairment, and reduced overall physical
function and quality of life (119–122). Fear of complications is a major component
of diabetes distress, and depression associated with complications increases mortality
(123,124). Care should be taken when discussing rates, causes, and probability of
diabetes complications. Providers should acknowledge that discussing complications
can be uncomfortable and distressing and should encourage dialogue over multiple visits.
Chronic pain from neuropathy is associated with prevalent psychosocial distress, depression,
and sleep disturbance (125,126). Care providers should routinely monitor for chronic
pain associated with diabetes complications and its impact on quality of life. Appropriate
pain management therapies, including referral to a mental health provider for pain
self-management strategies, should be provided.
Onset of diabetes complications threatens independence, self-image, and quality of
life. To identify the level of self-care independence and necessary adjunctive supports,
providers should evaluate whether individuals have a cognitive impairment impacting
the ability to do a task (e.g., poor memory or information processing), a functional
limitation that interferes with task performance (e.g., poor motor control or impaired
vision), a disability that impacts doing the task without assistance or accommodation
(e.g., paralysis or amputation); or a combination of the above (127). Unless limitations
are profound and/or formal evaluation clearly determines decreased capabilities, providers
should not assume a patient is unable to self-manage. Reassessment of self-management
efficacy, abilities, and need for adaptations or assistance is indicated with the
onset or worsening of functional limitations or disabilities including vision, hearing,
or physical impairment. For example, people with visual disability may benefit from
materials that meet low-vision guidelines (128).
Bariatric Surgery
Recommendations
People presenting for bariatric surgery should receive a comprehensive mental health
assessment by a professional familiar with weight-loss interventions and postbariatric
surgery behavioral requirements. B
If psychopathology is evident, particularly suicidal ideation and/or significant depression,
postponement of surgery should be considered so that patient suffering can be addressed
before adding the burden of recovery and lifestyle/psychosocial adjustment. E
For people who undergo bariatric surgery, consider assessment for need of ongoing
mental health services to help them adjust to medical and psychosocial changes postsurgery.
C
Bariatric surgery supports weight loss in people with severe obesity, often with adjunctive
remission of type 2 diabetes (129,130). People presenting for bariatric surgery have
increased rates of depression and other major psychiatric disorders compared with
healthy people and are prone to clinically significant body image disorders, sexual
dysfunction, and suicidal behavior (131). Psychosocial well-being and depression,
anxiety, and self-care behaviors should be an essential component of the pre- and
postsurgical evaluation and monitored during the year after surgery (132).
People with preoperative psychopathology should be assessed at regular intervals following
surgery to optimize control over psychiatric conditions and to ensure that psychiatric
symptoms do not interfere with weight loss and/or lifestyle change. History of eating
patterns, disordered eating behaviors, and clinically significant eating disorders,
including night eating syndrome, should be evaluated and monitored pre- and postsurgically
at regularly scheduled medical management visits. Bariatric surgery in and of itself
does not alleviate psychiatric symptoms, but it may result in remission of food addiction
among those who were extremely obese (133).
CONCLUSIONS: PSYCHOSOCIAL CARE IN CONTEXT
PWD must master many complex tasks and behaviors to successfully incorporate diabetes
care into daily life. Disease management cannot be successful unless the lifestyle
and emotional status of the individual is taken into consideration. As detailed in
this Position Statement, routine monitoring and screening for diabetes distress, depression,
anxiety, eating issues, and appropriate levels of social and family support, as well
as contextual factors that impede implementation of care, are clearly indicated. Effectiveness
of regimen and care provision will be enhanced by the inclusion of behavioral health
services into the diabetes treatment team. Collaborative care shows the most promise
for supporting physical and behavioral health outcomes.
The integration of screening into clinical settings, with appropriate referrals to
qualified mental health professionals for reasons noted in Table 1, can improve outcomes.
Challenges to accomplishing this standard of care are considerable, including too
few qualified mental health professionals who understand living with diabetes and
medical care models that are not conducive to team care. Those in most need, the disadvantaged
lower socioeconomic level families, have the poorest access to diabetes services (134).
The psychosocial services recommended are reimbursable for mental health providers
in routine medical care under Centers for Medicare & Medicaid Services (CMS). In addition,
new CMS reimbursement is planned for the Collaborative Care Model in routine care.
With changing laws mandating minimum standards and payment for diabetes care services
(135) and the availability of low-cost insurance that also reimburses preventive services,
this balance is changing, allowing the practitioner to incorporate previously unsupported
services into routine practice. Knowing how to evaluate and treat common psychosocial
issues that impact PWD can inform routine care. The integration of psychosocial care
and ensuring access to services will benefit the PWD and the care team.