Characterization of Diabetes Distress: Assessing Demographic, Clinical, Behavioral, and Psychosocial Correlates

Emma Carpenter

Introduction

Diabetes, a group of complex metabolic diseases[1,2] encompassing type 1 diabetes (T1D), type 2 diabetes (T2D), and other subtypes, is estimated to affect 10.5% of the U.S. population.[3] Characterized by hyperglycemia,1 diabetes requires complex self-care practices to ensure proper glycemic control.[4,5] However, suboptimal levels of glycemic control are common among diabetic patients.[6-8] Additionally, extensive literature has shown the influence of psychosocial factors on the adherence to self-management behaviors in diabetes[7,8]–with depressive symptoms found to be associated with suboptimal self-care practices and poor clinical outcomes.[9-13]

Diabetes distress, or the emotional burden that accompanies diabetes and its demanding self-care behaviors,[4,13] represents a large barrier to the proper management of diabetes due to its association with suboptimal health-related outcomes.[14] Distinct from clinical depression, diabetes distress is not a psychiatric disorder, but instead is the emotional reaction to managing diabetes.[11] Glycated hemoglobin (HbA1c) level, an indicator of glycemic control, has been shown to be more closely linked to diabetes distress than to depressive symptoms in diabetic adults and adolescents.[15,16] The prevalence of diabetes distress has been highlighted by several studies.[17-20] In the second Diabetes Attitudes, Wishes and Needs study (DAWN2), a cross-national study involving 17 countries, 44.6% of people with diabetes reported experiencing diabetes distress.[20] The demonstrated prevalence of diabetes distress and its association with substandard self-care practices and glycemic control illustrate its high clinical importance.

Although the clinical significance of diabetes distress has been established, a study examining the use of diabetes distress screening methods among endocrinologists and diabetes educators in Canadian clinics demonstrated that very few health care providers (HCPs) utilized diabetes distress questionnaires.[21] Furthermore, when depressive symptoms of diabetic patients are assessed by HCPs, certain measures, such as the Center for Epidemiological Studies Depression Scale (CESD),[22] can often misdiagnose diabetes distress as depression–resulting in inadequate treatment.[11,22] In fact, previous studies have indicated that a majority of diabetic patients with comorbid depressive symptoms do not have clinical depression, but instead are burdened with high levels of diabetes distress.[18,22]

Due to the prevalence of diabetes distress, its demonstrated significance, and its lack of adequate current assessment in a clinical setting, there is a need to identify the factors associated with this condition. While previous literature has suggested the relationship between diabetes distress and several demographic, clinical, psychosocial, and behavioral measures, there is a lack of extensive reviews that summarize such findings. This review provides a comprehensive and up-to-date overview of the factors associated with diabetes distress for use in its proper identification and subsequent intervention. The predictors of diabetes distress will be assessed using several factors: demographic and clinical factors, including sex, age, socioeconomic status (SES), and HbA1c level; behavioral factors, including various self-care practices; and psychosocial factors, including psychological health concerns, self-efficacy, and social support. 

Demographic and Clinical Factors Associated with Diabetes Distress

            Several demographic and health-related variables have been associated with diabetes distress. With respect to demographic variables, sex, [2,13,14,18,23] age, [18,23,24] and SES[14,25] represent potential predictors of diabetes distress. Meanwhile, a clinical factor strongly linked to diabetes distress is HbA1c level.[14,15,23,27-30]

Female sex was identified as a predictor of diabetes distress in several studies.[2,13,14,18,23] In a retrospective cohort study assessing the long-term patterns and predictors of chronic diabetes distress among adolescents, Iturralde et al. identified sex as a demographic variable related to diabetes distress.[13] Using the 26-item Problem Areas in Diabetes-Teen version (PAID-T) scale, researchers classified adolescents into four groups: low diabetes distress, improving diabetes distress, stable moderate diabetes distress, and stable high diabetes distress.[13] Researchers found that females were three times more likely than males to have stable high diabetes distress, while those with low diabetes distress were more likely to be male than female.[13] In adults, a similar association between female sex and diabetes distress has been demonstrated.[2,14,18,23] From these studies, female sex emerges as a predictor of diabetes distress in adolescents and adults.

Younger age[18,23,24] and lower SES[14,25] represent additional predictors of diabetes distress. In a cross-sectional study that evaluated factors associated with diabetes distress, Wardian and Sun identified younger age as a predictor of this condition.[24] Data was collected from 267 adults with T2D who completed the Diabetes Distress Scale (DDS).[24] Researchers found that younger age was significantly associated with higher diabetes distress.[24] Lower SES has also been identified as a correlate of diabetes distress.[14] In a nationwide German cohort study evaluating the relationship between diabetes distress and health-related measures, Stahl-Pehe et al. demonstrated an association between high diabetes distress and low SES.[14] Using a sample of young adults and adolescents with early onset T1D, researchers collected demographic data and assessed diabetes distress using the Problem Areas in Diabetes (PAID) scale.[14]  Through cross-sectional analysis, researchers found that higher PAID scores were associated with lower SES.[14] 

Elevated HbA1c level is a clinical factor strongly associated with diabetes distress.[14,15,23,27-30] As a measure of blood glucose concentration, HbA1c level is not only an indicator of glycemic control, but also predicts the risk of future diabetes complications.[26] Therefore, the significant association between high diabetes distress and elevated HbA1c level–demonstrated in both adolescents[14,27,29] and adults[14,15,23,27,28,30]–is concerning. Given the well-demonstrated relationship between HbA1c level and diabetes distress, HbA1c level can be conclusively identified as a correlate of diabetes distress.

Behavioral Factors Associated with Diabetes Distress

Multiple behavioral factors associated with diabetes distress have been identified. Self-care behaviors, including taking medication, following a healthy diet, engaging in physical activity, checking blood glucose, and problem-solving, are required to ensure proper glycemic control.[4] However, poor self-management, involving less frequent self-care behaviors and poorer problem-solving or coping strategies, has been linked to diabetes distress in several studies.[13,15,23,24,28]

 In a previously referenced study by Iturralde et al., researchers identified several behavioral factors associated with diabetes distress in adolescents.[13] In this study, adherence to self-care tasks, including monitoring blood glucose levels, regulating insulin and food intake, and engaging in physical activity, was assessed by the Self-Care Inventory (SCI).[13] Researchers found that greater adherence to self-care practices was present among those with improving low diabetes distress.[13] Meanwhile, those with stable high diabetes distress were found to take part in self-care behaviors less often and possess poorer problem-solving and coping strategies.[13] Furthermore, in an additional study by Iturralde et al., results of a randomized control trial involving 264 adolescents with T1D demonstrated that higher diabetes distress was associated with greater use of avoidant coping style–a poor form of coping that involves putting off attempts to solve a problem.[28] Additionally, researchers found that higher diabetes distress was associated with less frequent blood glucose checks and self-care practices.[28]

Similar results regarding the relationship between adherence to self-care behaviors and diabetes distress have been found in adult patients. In a retrospective cohort study analyzing the data of 2,374 patients with T2D from the Benchmarking Network for Clinical and Humanistic Outcomes in Diabetes (BENCH-D) study in Italy, Pintaudi et al. found that those with high diabetes distress (PAID score ≥ 40) participated in self-care activities less often. [23] In addition, Wardian and Sun found that low diabetes distress was correlated with greater adherence to a healthy diet.24 Further support for the association between high diabetes distress and less adherence to self-care practices was provided by a comparative study by Asuzu et al.[15] In this study of 615 adults with T2D, researchers found a significant association between high diabetes distress and suboptimal self-care practices.[15]

Psychosocial Factors Associated with Diabetes Distress

A multitude of psychosocial factors have been linked to diabetes distress. Such factors, including psychological health concerns, self-efficacy, and social support, have been identified by several studies. Psychological health concerns, encompassing depressive and anxious symptoms, poor satisfaction with life, and eating and weight concerns, have been shown to complicate the self-management of diabetes.[27] At the same time, self-efficacy–the belief that one can successfully manage one’s own health–and social support have been shown to mitigate the effects of distress.[23,24,28]

Poor psychological health concerns and low levels of self-efficacy have been identified as predictors of high diabetes distress. In a retrospective study, Powers et al. identified several psychosocial correlates of diabetes distress.[27] In this study, the data from 268 adolescents and young adults with T1D who took the 2-item Diabetes Distress Screening Scale (DDS2) and various instruments assessing psychological health concerns was used.[27] To analyze collected data, the scores for each subscale were evaluated within two age groups (adolescents and young adults).[27] In both adolescents and young adults, higher levels of diabetes distress were correlated with depressive symptoms and concerns regarding diet and weight.[27] In addition, higher levels of diabetes distress among adolescents were correlated with lower scores for self-image and self-efficacy and higher scores for dietary restraint.[27] Overall, researchers found that those with high diabetes distress reported poorer psychological health concerns and lower self-efficacy than those with moderate to low diabetes distress.[27]

Additional studies have shown similar findings. In addition to aforementioned behavioral and clinical factors, Iturralde et al. identified various psychosocial factors, including elevated psychological distress and depressive and anxious symptoms, associated with stable high diabetes distress.[13] Furthermore, Stahl-Pehe et al. found that lower PAID scores–indicating a lower level of diabetes distress–were present in those with better mental health.[14]

A low level of perceived social support represents another predictor of diabetes distress.[23,24,28] In an Italian cohort study, Indelicato et al. assessed the connection between diabetes distress, glycemic control, and various psychological factors relating to diabetes.[28] In this study, 172 adults with T2D received a medical assessment and completed various questionnaires assessing depression, anxiety, and psychological factors related to diabetes.[28] Psychological factors, including self-efficacy and social support, were assessed using the Multidimensional Diabetes Questionnaire (MDQ).[28] Researchers found that those with high diabetes distress possessed lower self-efficacy and social support from family, friends, and HCPs.[28] Similarly, Pintaudi et al. found that patients with high diabetes distress had lower levels of self-assessed social support, as well as a lower psychological well-being index.[23] In addition, the aforementioned study by Wardian and Sun specifically identified level of physician-related support as a factor linked to diabetes distress.[24] In this study, researchers found that low diabetes distress was correlated with higher self-efficacy and more support from HCPs.[24]

Conclusion

Female sex, [2,13,14,18,23] younger age, [18,23,24] lower SES,[14,25] and higher HbA1c level[14,15,23,27-30] represent potential predictors of diabetes distress. The vulnerability of females to diabetes distress is congruent with larger sex-related differences regarding the prevalence of affective disorders.[31] Younger diabetic individuals may have additional life stressors regarding school, work, or financial challenges that increase their susceptibility to experiencing diabetes distress.[24] Diabetic patients with low SES–a population disproportionately affected by the complications of diabetes[32]–represent another group at risk for high diabetes distress. As either the cause or result of diabetes distress, elevated HbA1c levels represent a strong predictor of this condition. Previously referenced studies that demonstrate the relationship between diabetes distress and poor glycemic control highlight the importance of addressing diabetes distress in a clinical setting. Additionally, given the association between these two variables, HbA1c levels can potentially help HCPs predict a patient’s vulnerability to experiencing diabetes distress. These aforementioned findings indicate that screening and interventions for diabetes distress should be directed toward younger individuals and women with low SES and elevated HbA1c levels.

Poor self-management of diabetes, encompassing low adherence to self-care behaviors and poor problem-solving or coping strategies, has been found to be a behavioral factor associated with diabetes distress.[13,15,23,24,28] However, whether poor self-management contributes to or is the result of diabetes distress in diabetic patients remains relatively unclear. Nevertheless, low adherence to self-care behaviors and poor strategies to deal with diabetes self-management result in suboptimal glycemic control. Therefore, HCPs should work to promote adherence to self-care behaviors and improve problem-solving and coping strategies in diabetic patients to enhance glycemic control and potentially target diabetes distress.

Psychosocial factors, including poor psychological health concerns, low self-efficacy, and lack of social support, have been identified as additional predictors of diabetes distress.[13,14,23,24,27,28] Patients with poor psychological health concerns, including depressive and anxious symptoms, poor satisfaction with life, and eating and weight concerns, represent a population at increased risk for experiencing diabetes distress. In addition to patients with poor psychological health concerns, those with low self-efficacy or social support may be especially vulnerable to experiencing diabetes distress. Due to the lack of necessary confidence or sufficient support required for proper management of a demanding chronic condition, patients with low self-efficacy or social support may be less likely to engage in diabetes self-management.[24] HCPs may therefore want to target improving psychological health concerns and increasing social support and self-efficacy in patients with diabetes. Additionally, due to the demonstrated significance of physician-related support in reducing diabetes distress, HCPs can work to improve the quality of their provider-patient relationships to target diabetes distress.

As a widely prevalent[17-20]–yet often underdiagnosed–condition associated with suboptimal diabetes outcomes, diabetes distress holds high importance in a clinical setting. Due to the significance of diabetes distress, this review identified the factors associated with this condition. By summarizing demographic, clinical, behavioral, and psychosocial factors associated with diabetes distress, this review provides a comprehensive and timely overview of the correlates of diabetes distress for use in a clinical setting. Overall, proper identification and intervention of diabetes distress is necessary to improve health-related outcomes and psychological well-being of diabetic patients. The findings of this review help to identify those at most risk for diabetes distress for the development of targeted screening methods. Furthermore, by identifying preventable factors associated with diabetes distress, this review helps to clarify where interventions for diabetes distress should focus. Future research concerning diabetes distress should seek to further verify the aforementioned correlates of this condition. Additionally, the efficacy of targeted screening and interventions for diabetes distress recommended by this review should be assessed by further research.

Emma Carpenter recently graduated from the University of Florida with a B.S. in biology and a minor in health disparities in society. Emma is pursuing a career in medicine where she aspires to provide compassionate, patient-centered health care. Emma hopes that her medical review can help raise awareness of diabetes distress and inform others of the factors associated with this condition.


 

References

1.      American Diabetes Association. Diagnosis and classification of diabetes mellitus. Diabetes Care. 2013;36 Suppl 1(Suppl 1):S67-S74. doi:10.2337/dc13-S067

2.      Gahlan D, Rajput R, Gehlawat P, Gupta R. Prevalence and determinants of diabetes distress in patients of diabetes mellitus in a tertiary care centre. Diabetes Metab Syndr. 2018;12(3):333-336. doi:10.1016/j.dsx.2017.12.024

3.      Centers for Disease Control and Prevention. National diabetes statistics report, 2020. Accessed October 16, 2020. https://www.cdc.gov/diabetes/data/statistics-report/index.html.

4.      Dennick K, Sturt J, Speight J. What is diabetes distress and how can we measure it? A narrative review and conceptual model. J Diabetes Complications. 2017;31(5):898-911. doi:10.1016/j.jdiacomp.2016.12.018

5.      Jones H, Edwards L, Vallis TM, et al. Changes in diabetes self-care behaviors make a difference in glycemic control: The Diabetes Stages of Change (DiSC) study. Diabetes Care. 2003;26(3):732-737. doi:10.2337/diacare.26.3.732

6.      Hood KK, Rohan JM, Peterson CM, Drotar D. Interventions with adherence-promoting components in pediatric type 1 diabetes: Meta-analysis of their impact on glycemic control. Diabetes Care. 2010;33(7):1658-1664. doi:10.2337/dc09-2268

7.      Miller KM, Foster NC, Beck RW, et al. Current state of type 1 diabetes treatment in the U.S.: Updated data from the T1D Exchange clinic registry. Diabetes Care. 2015;38(6):971-978. doi:10.2337/dc15-0078

8.      Pettus JH, Zhou FL, Shepherd L, et al. Incidences of severe hypoglycemia and diabetic ketoacidosis and prevalence of microvascular complications stratified by age and glycemic control in U.S. adult patients with type 1 diabetes: A real-world study. Diabetes Care. 2019;42(12):2220-2227. doi:10.2337/dc19-0830

9.      Alvarado-Martel D, Ruiz Fernández MÁ, Cuadrado Vigaray M, et al. Identification of psychological factors associated with adherence to self-care behaviors amongst patients with type 1 diabetes. J Diabetes Res. 2019;2019:6271591. doi:10.1155/2019/6271591

10.   McGrady ME, Laffel L, Drotar D, Repaske D, Hood KK. Depressive symptoms and glycemic control in adolescents with type 1 diabetes: Mediational role of blood glucose monitoring. Diabetes Care. 2009;32(5):804-806. doi:10.2337/dc08-2111

11.   Fisher L, Gonzalez JS, Polonsky WH. The confusing tale of depression and distress in patients with diabetes: A call for greater clarity and precision. Diabet Med. 2014;31(7):764-772. doi:10.1111/dme.12428

12.   Lin EH, Katon W, Von Korff M, et al. Relationship of depression and diabetes self-care, medication adherence, and preventive care. Diabetes Care. 2004;27(9):2154-2160. doi:10.2337/diacare.27.9.2154

13.   Iturralde E, Rausch JR, Weissberg-Benchell J, Hood KK. Diabetes-related emotional distress over time. Pediatrics. 2019;143(6):e20183011. doi:10.1542/peds.2018-3011

14.   Stahl-Pehe A, Glaubitz L, Bächle C, et al. Diabetes distress in young adults with early-onset Type 1 diabetes and its prospective relationship with HbA1c and health status. Diabet Med. 2019;36(7):836-846. doi:10.1111/dme.13931

15.   Asuzu CC, Walker RJ, Williams JS, Egede LE. Pathways for the relationship between diabetes distress, depression, fatalism and glycemic control in adults with type 2 diabetes. J Diabetes Complications. 2017;31(1):169-174. doi:10.1016/j.jdiacomp.2016.09.013

16.   Hagger V, Hendrieckx C, Cameron F, Pouwer F, Skinner TC, Speight J. Diabetes distress is more strongly associated with HbA1c than depressive symptoms in adolescents with type 1 diabetes: Results from Diabetes MILES Youth-Australia. Pediatr Diabetes. 2018;19(4):840-847. doi:10.1111/pedi.12641

17.   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(4 Pt 1):341-344. doi:10.1111/j.1399-5448.2010.00720.x

18.   Fisher L, Skaff MM, Mullan JT, Arean P, Glasgow R, Masharani U. A longitudinal study of affective and anxiety disorders, depressive affect and diabetes distress in adults with Type 2 diabetes. Diabet Med. 2008;25(9):1096-1101. doi:10.1111/j.1464-5491.2008.02533.x

19.   Perrin NE, Davies MJ, Robertson N, Snoek FJ, Khunti K. The prevalence of diabetes-specific emotional distress in people with Type 2 diabetes: A systematic review and meta-analysis. Diabet Med. 2017;34(11):1508-1520. doi:10.1111/dme.13448

20.   Nicolucci A, Kovacs Burns K, Holt RI, et al. Diabetes Attitudes, Wishes and Needs second study (DAWN2™): Cross-national benchmarking of diabetes-related psychosocial outcomes for people with diabetes [published correction appears in Diabet Med. 2013 Oct;30(10):1266]. Diabet Med. 2013;30(7):767-777. doi:10.1111/dme.12245

21.   Yared Z, Blunden S, Stotland S. Addressing a care gap in type 1 diabetes management: Using the diabetes distress scale in a community care setting to address diabetes-related treatment challenges. Can J Diabetes. 2020;44(6):514-520. doi:10.1016/j.jcjd.2020.06.011

22.   Fisher L, Skaff MM, Mullan JT, et al. Clinical depression versus distress among patients with type 2 diabetes: Not just a question of semantics. Diabetes Care. 2007;30(3):542-548. doi:10.2337/dc06-1614

23.   Pintaudi B, Lucisano G, Gentile S, et al. Correlates of diabetes-related distress in type 2 diabetes: Findings from the benchmarking network for clinical and humanistic outcomes in diabetes (BENCH-D) study. J Psychosom Res. 2015;79(5):348-354. doi:10.1016/j.jpsychores.2015.08.010

24.   Wardian J, Sun F. Factors associated with diabetes-related distress: Implications for diabetes self-management. Soc Work Health Care. 2014;53(4):364-381. doi:10.1080/00981389.2014.884038

25.   Fegan-Bohm K, Minard CG, Anderson BJ, et al. Diabetes distress and HbA1c in racially/ethnically and socioeconomically diverse youth with type 1 diabetes [published online ahead of print, 2020 Aug 25]. Pediatr Diabetes. 2020;10.1111/pedi.13108. doi:10.1111/pedi.13108

26.   Sherwani SI, Khan HA, Ekhzaimy A, Masood A, Sakharkar MK. Significance of HbA1c test in diagnosis and prognosis of diabetic patients. Biomark Insights. 2016;11:95-104. Published 2016 Jul 3. doi:10.4137/BMI.S38440

27.   Powers MA, Richter SA, Ackard DM, Craft C. Diabetes distress among persons with type 1 diabetes. Diabetes Educ. 2017;43(1):105-113. doi:10.1177/0145721716680888

28.   Indelicato L, Dauriz M, Santi L, et al. Psychological distress, self-efficacy and glycemic control in type 2 diabetes. Nutr Metab Cardiovasc Dis. 2017;27(4):300-306. doi:10.1016/j.numecd.2017.01.006

29.   Iturralde E, Weissberg-Benchell J, Hood KK. Avoidant coping and diabetes-related distress: Pathways to adolescents' Type 1 diabetes outcomes. Health Psychol. 2017;36(3):236-244. doi:10.1037/hea0000445

30.   Wong EM, Afshar R, Qian H, Zhang M, Elliott TG, Tang TS. Diabetes Distress, Depression and Glycemic Control in a Canadian-Based Specialty Care Setting. Can J Diabetes. 2017;41(4):362-365. doi:10.1016/j.jcjd.2016.11.006

31.   Seney ML, Sibille E. Sex differences in mood disorders: Perspectives from humans and rodent models. Biol Sex Differ. 2014;5(1):17. doi:10.1186/s13293-014-0017-3

32.   Saydah SH, Imperatore G, Beckles GL. Socioeconomic status and mortality: Contribution of health care access and psychological distress among U.S. adults with diagnosed diabetes. Diabetes Care. 2013;36(1):49-55. doi:10.2337/dc11-1864