Psychosocial Care For People With Diabetes: A Position .
PSYCHOSOCIAL RESEARCH AND CARE IN DIABETES2126Diabetes Care Volume 39, December 2016Psychosocial Care for People WithDiabetes: A Position Statement ofthe American Diabetes AssociationDeborah Young-Hyman,1 Mary de Groot,2Felicia Hill-Briggs,3 Jeffrey S. Gonzalez,4Korey Hood,5 and Mark Peyrot6Diabetes Care 2016;39:2126–2140 DOI: 10.2337/dc16-2053Complex 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, individualswith diabetes and their families are challenged with complex, multifaceted issueswhen integrating diabetes care into daily life. To promote optimal medical outcomes and psychological well-being, patient-centered care is essential, definedas “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, diagnosticevaluation, and intervention services take into account the context of the person withdiabetes (PWD) and the values and preferences of the PWD.This article provides diabetes care providers with evidence-based guidelines forpsychosocial assessment and care of PWD and their families. Recommendationsare 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) iscritical in the psychosocial care of PWD. This Position Statement focuses on themost common psychological factors affecting PWD, including diabetes distress andpsychological comorbidities, while also considering the needs of special populations and the context of care.GENERAL CONSIDERATIONS IN PSYCHOSOCIAL CARERecommendationscccccPsychosocial care should be integrated with collaborative, patient-centeredmedical care and provided to all people with diabetes, with the goals ofoptimizing health outcomes and health-related quality of life. AProviders should consider an assessment of symptoms of diabetes distress,depression, anxiety, and disordered eating and of cognitive capacities usingpatient-appropriate standardized/validated tools at the initial visit, at periodicintervals, and when there is a change in disease, treatment, or life circumstance.Including caregivers and family members in this assessment is recommended. BConsider monitoring patient performance of self-management behaviors aswell as psychosocial factors impacting the person’s self-management. EConsider assessment of life circumstances that can affect physical and psychological health outcomes and their incorporation into intervention strategies. EAddressing psychosocial problems upon identification is recommended. If an intervention cannot be initiated during the visit when the problem is identified, afollow-up visit or referral to a qualified behavioral health care provider may bescheduled during that visit. EPractitioners should identify behavioral/mental health providers, ideally those who areknowledgeable about diabetes treatment and the psychosocial aspects of diabetes, withwhom they can form alliances and use for referrals (Table 1) in the psychosocial care ofPWD. Ideally, psychosocial care providers should be embedded in diabetes care settings.Shared resources such as electronic health records, management data, and patient-reported1Office of Behavioral and Social Science Research,National Institutes of Health, Bethesda, MD2Indiana University School of Medicine, Indianapolis, IN3Johns Hopkins School of Medicine, Baltimore,MD4Yeshiva University and the Albert Einstein College of Medicine, Bronx, NY5Stanford University, Stanford, CA6Loyola University Maryland, Baltimore, MDCorresponding author: Deborah Young-Hyman,younghyd@od.nih.gov.This position statement was reviewed and approved by the American Diabetes AssociationProfessional Practice Committee in September2016 and ratified by the American Diabetes Association Board of Directors in October 2016. 2016 by the American Diabetes Association.Readers may use this article as long as the workis properly cited, the use is educational and notfor profit, and the work is not altered. More information is available at e accompanying articles, pp. 2122,2141, 2149, 2158, 2165, 2174, 2182,2190, and 2197.
care.diabetesjournals.orgYoung-Hyman and AssociatesFigure 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.information regarding adjustment to illnessand life course issues facilitate providers’capacity to identify and remediate psychosocial issues that impede regimenimplementation and improve diabetesmanagement and well-being. Care modelsthat take into account cultural influences, aswell as personal, family, and communityTable 1—Situations that warrant referral of a person with diabetes to a mentalhealth provider for evaluation and treatmentc If self-care remains impaired in a person with diabetes distress after tailoreddiabetes educationc If a person has a positive screen on a validated screening tool for depressive symptomsc In the presence of symptoms or suspicions of disordered eating behavior, an eating disorder,or disrupted patterns of eatingc If intentional omission of insulin or oral medication to cause weight loss is identifiedc If a person has a positive screen for anxiety or FoHc If a serious mental illness is suspectedc In youth and families with behavioral self-care difficulties, repeated hospitalizations fordiabetic ketoacidosis, or significant distressc If a person screens positive for cognitive impairmentc Declining or impaired ability to perform diabetes self-care behaviorsc Before undergoing bariatric surgery and after if assessment reveals an ongoing need foradjustment supportresources, and tailor care to the core values and lifestyle of the individual aremore likely to be successful (2). Regardless of how the diabetes care team is constituted, the PWD is central to the careprocess. If a PWD cannot act on behalf ofhim/herself in the care process, a supportperson needs to be identified to participatein treatment decisions and facilitate diseasemanagement. It is also important that providers enlist members of the patient’s socialsupport network to aid in the identification,prevention, and resolution of psychosocialproblems.Medical management of diabetes requires patient implementation of a treatment regimen. Thus, psychosocial factorsimpacting self-care such as diabetes distress(burdens of diabetes and its treatment,worries about adverse consequences),lack of social and economic resources, and2127
DepressionDiabetes-relateddistressTopic areaChild Depression Inventory(CDI) (current edition isCDI-2)Geriatric Depression Scale (GDS)Spitzer RL, Williams JB, Kroenke K, et al. Utility ofnew procedure for diagnosis mental-disorders inprimary-care: the PRIME-MD 1000 Study. JAMA1994;272:1749–1756Beck AT, Steer RA, Brown GK. Manual for the Beck DepressionInventory-II, 2nd ed. San Antonio, TX, Harcourt, Brace &Company, 1996Kovacs, M. The Children’s Depression Inventory (CDI):Technical Manual Update. North Tonawanda, NY,Multi-Health Systems, 2003Sheikh JI, Yesavage JA. Geriatric Depression Scale(GDS): recent evidence and development ofa shorter version. Clinical Gerontologist1986;5:165–172Polonsky WH, Anderson BJ, Lohrer PA, et al. Assessment ofdiabetes-related distress. Diabetes Care 1995;18:754–760Welch G, Weinger K, Anderson B, Polonsky WH.Responsiveness of the Problem Areas inDiabetes (PAID) questionnaire. Diabet Med2003;20:69–72Polonsky WH, Fisher L, Earles J, et al. Assessingpsychosocial stress in diabetes: development of theDiabetes Distress Scale. Diabetes Care2005;28:626–631Fisher L, Hessler DM, Polonsky WH, Mullan J. When isdiabetes distress clinically meaningful? Establishing cutpoints for the Diabetes Distress Scale. Diabetes Care2012;35:259–64 (39)Markowitz JT, Volkening LK, Butler DA, Laffel LM. Youthperceived burden of type 1 diabetes: Problem Areas inDiabetes Survey-Pediatric Version (PAID-Peds).J Diabetes Sci Technol 2015;9:1080–1085Weissberg-Benchell J, Antisdel-Lomaglio, J. Diabetesspecific emotional distress among adolescents:feasibility, reliability, and validity of the problem areasin diabetes-teen version. Pediatr Diabetes2011;12:341–344Markowitz JT, Volkening LK, Butler DA, Antisdel-LomaglioJH, Anderson BJ, Laffel LM. Re-examining a measure ofdiabetes-related burden in parents of young peoplewith type 1 diabetes: the Problem Areas in DiabetesSurvey–Parent Revised version (PAID-PR). DiabetMed 2012;29:526–530CitationsContinued on p. 2129Adults (ages 55–85 years)Youth (ages 7–17 years)AdultsAdultsParents of children andadolescents (ages 8–18years) with type 1 diabetes18-item questionnaire assessingperceived parental burden ofdiabetes9-item measure of depressivesymptoms (corresponding tocriteria for major depressivedisorder)21-item questionnaire evaluatingsomatic and cognitive symptoms ofdepression27-item measure assessingdepressive symptoms using childand parent report15-item measure was developedto assess depression in olderadultsAdolescents (ages 11–19years) with diabetesYouth (ages 8–17 years) withtype 1 diabetesAdults with type 1 and type 2diabetesAdults with type 1 and type 2diabetesValidated population26-item questionnaire measuringperceived burden of diabetes20-item measure of diabetes burden17-item questionnaire measuringdiabetes-specific distress in fourdomains: emotional burden,diabetes interpersonal distress,physician-related distress, andregimen-related distress20-item measure of diabetes-specificdistress measuring emotionaldistress and burden associatedwith diabetesDescriptionPosition StatementBeck Depression Inventory–II(BDI-II)Patient Health Questionnaire(PHQ-9)PAID–Parent Revised version(PAID-PR)PAID–Teen VersionPAID–Pediatric Version(PAID-Peds)Diabetes Distress Scale (DDS)Problem Areas in Diabetes (PAID)Measure titleTable 2—Selected measures for the evaluation of psychosocial constructs in the clinical setting2128Diabetes Care Volume 39, December 2016
Self-care efficacyHealth literacyand numeracyEating disordersTopic areaTable 2—ContinuedSelf-efficacy for diabetesmanagementDiabetes self-efficacyBrief Health Literacy Scale (BHLS)Diabetes Numeracy Test (DNT)General Health Numeracy Test(GHNT)Ritter PL, Lorig K, Laurent D. Characteristics of theSpanish- and English-language self-efficacy to managediabetes scales. Diabetes Educ 2016;42:167–177Iannotti RJ, Schneider S, Nansel TR, et al. Self-efficacy,outcome expectations, and diabetes selfmanagement in adolescents with type 1diabetes. J Dev Behav Pediatr 2006;27:98–105 (26)Wallston KA, Cawthon C, McNaughton CD, Rothman RL,Osborn CY, Kripalani S. Psychometric properties of theBriefHealth Literacy Screen in clinicalpractice.J GenInternMed 2014;29:119–126Osborn CY, Wallston KA, Shpigel A, Cavanaugh K,Kripalani S, Rothman RL. Development and validationof the General Health Numeracy Test(GHNT). Patient Educ Couns 2013;91:350–356Huizinga MM, Elasy TA, Wallston KA, et al. Development andvalidation of the Diabetes Numeracy Test (DNT). BMCHealth Ser Res 2008;1:96Markowitz JT, Butler DA, Volkening LK, Antisdel JE,Anderson BJ, Laffel LM. Brief screening tool fordisordered eating in diabetes: internal consistencyand external validity in a contemporary sample ofpediatric patients with type 1 diabetes. Diabetes Care2010;33:495–500Young-Hyman D, Davis C, Grigsby C, Looney S, Peterson C.Development of the Diabetes Treatment and SatietyScale: DTSS-20 (Abstract). Diabetes 2011;60(Suppl. 1):A218Diabetes Eating Problems Survey(DEPS-R)8-item self-report scale designed toassess confidence in performingdiabetes self-care activities10-item self-report self-efficacy scale5-, 15-, and 43-item word problem–based test to assess understanding oftables, graphs, and figures specific tothe management of diabetes3-item measure read aloud to patientsin an outpatient and emergencydepartment setting to assessunderstanding of healthconcepts21-item self-report questionnairedesigned to assess patient level ofunderstanding of the use of numbersin medications and health20-item self-report measure thatassesses perception of satiety andfullness in the context of foodintake, physical activity,medication dosing, and glycemiclevels2 interview and self-report surveysaimed at the measurement ofpsychological traits or symptomclusters relevant to thedevelopment and maintenance ofeating disorders16-item self-report measuredesigned to assess diabetesspecific eating issuesGarner DM. Eating Disorder Inventory-3: ProfessionalManual. Odessa, FL, Psychological AssessmentResources, 2004Eating Disorders Inventory–3(EDI-3)Diabetes Treatment and SatietyScale (DTSS-20)DescriptionCitationsMeasure titleContinued on p. 2130Adolescents (ages 10–16years) with type 1 diabetesAdultsAdultsAdults (ages 18–80 years)AdultsYouth (ages 10–17 years) withtype 1 diabetesYouth (ages 13–19 years) withtype 1 diabetesFemales (ages 13–53 years)Validated populationcare.diabetesjournals.orgYoung-Hyman and Associates2129
Short-form McGill PainQuestionnaire (SF-MPQ-2)Cognitive assessment toolkitTelephone Interview for CognitiveStatus (TICS)Mini-Mental State Examination(MMSE)Children’s Hypoglycemia Index(CHI)Hypoglycemia Fear Survey-II(HFS-II)Beck Anxiety Inventory (BAI)State-Trait Anxiety Inventory forChildren (STAIC)Measure titleDworkin RH, Turk DC, Revicki DA, et al. Development andinitial validation of an expanded and revised version ofthe Short-form McGill Pain Questionnaire (SF-MPQ-2).Pain 2009;144:35–42Folstein MF, Folstein SE, McHugh PR. “Mini-mental”state: a practical method for grading the cognitivestate of patients for the clinician. J Psychiatr Res1975;12:189–198Crum RM, Anthony JC, Bassett SS, Folstein MF.Population-based norms for the Mini-Mental StateExamination by age and educational level. JAMA1993;269:2386–2391Brandt J, Spencer M, Folstein M. The TelephoneInterview for Cognitive Status. NeuropsychiatryNeuropsychol Behav Neurol 1988;1:111–117Brandt J, Folstein MF. Telephone Interview for CognitiveStatus (TICS) Professional Manual. Lutz, FL,Psychological Assessment Resources, 2003Cordell CB, Borson S, Boustani M, et al. Alzheimer’sAssociation recommendations for operationalizingthe detection of cognitive impairment during theMedicare Annual Wellness Visit in a primary caresetting. Alzheimers Dement 2013;9:141–150Spielberger CD, Edwards CD, Lushene R, Monturi J,Plotzek D. State-Trait Anxiety Inventory for ChildrenProfessional Manual. Menlo Park, CA, Mind Garden,Inc., 1973Beck AT, Steer RA. Beck Anxiety Inventory Manual.San Antonio, TX, The Psychological Corporation, 1993Cox DJ, Irvine A, Gonder-Frederick L, Nowacek G,Butterfield J. Fear of hypoglycemia: quantification,validation, and utilization. Diabetes Care1987;10:617–621 (63)Gonder-Frederick LA, Schmidt KM, Vajda KA, et al.Psychometric properties of the Hypoglycemia FearSurvey-II for adults with type 1 diabetes. DiabetesCare 2011;34:801–806 (71)Kamps JL, Roberts MC, Varela RE. Development of anew fear of hypoglycemia scale: preliminary results.J Pediatr Psychol 2005;30:287–291CitationsAdultsContinued on p. 2131AdultsDesigned for use during a medicaloffice visit to screen for cognitiveimpairment in older adults(includes informant interviewsalso)22-item questionnaire designed toassess painAdults (ages 60–98 years)Adults (ages 18 – 100 years)Youth (ages 8–16 years) withtype 1 diabetes11-item measure assessing cognitivestatus by telephone11-item (30-point) screen forcognitive impairment in adultsDesigned to assess FoH (25 items)Adults with type 1 diabetesAdultsYouth with and without type 1diabetes40 items on two dimensionsdtraitand state anxiety21 items assessing self-reportedanxiety33 items assessing behavioral andworry dimensions of hypoglycemiain adultsValidated populationDescriptionPosition StatementChronic painCognitive screeningin older adultsAnxietyTopic areaTable 2—Continued2130Diabetes Care Volume 39, December 2016
Adolescents (ages 12–17years) with diabetesAdults11-item self-report questionnairedesigned to assess the extent towhich patients take and refill theirdiabetes-related medications21-item self-report questionnairedesigned to assess barriers todiabetes self-care behaviorsAdults with type 1 and type 2diabetes11-item and expanded 25-itemmeasure of diabetes self-carebehaviorsYoung-Hyman and AssociatesBarriers to diabetes adherenceAdherence to Refills andMedications Scale (ARMS-D)Toobert DJ, Hampson SE, Glasgow RE. The Summary ofDiabetes Self-Care Activities measure: results from7 studies and a revised scale. Diabetes Care2000;23:943–950Kripalani S, Risser J, Gatti ME, Jacobson TA. Developmentand evaluation of the Adherence to Refills andMedications Scale (ARMS) among low-literacypatients with chronic disease. Value Health2009;12:118–123Mayberry LS, Gonzalez JS, Wallston KA, Kripalani S,Osborn CY. The ARMS-D outperforms the SDSCA, butboth are reliable, valid, and predict glycemic control.Diabetes Res Clin Pract 2013;102:96–104Mulvaney SA, Hood KK, Schlundt DG, et al. Developmentand initial validation of the barriers to diabetesadherence measure for adolescents. Diabetes Res ClinPract 2011;94:77–83Summary of Diabetes Self-CareActivities (SDSCA)Adherence toself-careTopic areaTable 2—ContinuedMeasure titleCitationsDescriptionValidated populationcare.diabetesjournals.orgother psychological states (e.g., depression, anxiety, eating disorders, cognitiveimpairment) (3), as well as health literacyand numeracy, should be monitored. Todetect problems early and prevent healthdeterioration, all PWD should be evaluated at the initial visit and on a periodicbasis going forward even if there is nopatient specific indication (4). In addition,evaluation is indicated during major disease and life transitions, including theonset of complications and significantchanges in treatment (i.e., initiation ofinsulin pump or other forms of intensification) or life circumstances (i.e., livingarrangements, job, and significant social relationships), with prospectivemonitoring for 6 months (a period ofincreased risk) (5).All care providers should includequeries about well-being in routinecare. Standardized and validated tools(Table 2) for psychosocial monitoring,assessment, and diagnosis can be usedby providers in a stepped sequence withpositive findings leading to further evaluation, starting with informal verbal inquiries for monitoring followed byquestionnaires for assessment (e.g.,PHQ-9) and finally by structured interviews for diagnosis (e.g., StructuredClinical Interview for the DSM-V). Forexample, the diabetes care provider canask whether there have been changes inmood during the past 2 weeks or sincetheir last visit. Further, providers shouldconsider asking whether there are newor different barriers to treatment adherence and self-management, suchas feeling overwhelmed or stressed bydiabetes or other life stressors. Positiveresponses can be probed with additional questions and/or use of standardized measures to inform assessmentand guide the selection of appropriateinterventions.When referral is warranted (Table 1),formal diagnostic assessments and interviews should be conducted by a qualified behavioral health provider familiarwith the care of PWD. Standardized,age- and literacy-appropriate assessment and diagnostic tools should beused (Table 2). These established measures were selected from a wider literature on the basis of the scientific rigo
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 d trait and state anxiety Youthwithandwithouttype1 diabetes Beck Anxiety Inventory (BAI) Beck AT, Steer RA. Beck Anxiety Inventory Manual
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Physicians, and Health Canada have stressed that assessment for psychosocial issues during pregnancy be a standard of obstetrical care. The original APLHA form and the Woman's Self Report form were developed for this reason; to ensure that psychosocial issues become part of comprehensive perinatal care. The Prenatal Psychosocial Health Assessment
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1.3 Perinatal mental health in men 18 2 Enabling effective mental health care in the perinatal period 20 2.1 Therapeutic elar tionship 20 2.2 Care provision 21 2.3 Support and information 22 . 6 Assessing psychosocial factors that affect mental health 31 6.1 Psychosocial assessment tools 31 6.2 Other considerations in psychosocial screening .
