The Science of Diabetes Self-Management and Care2023, Vol. 49(5) 392–400© The Author(s) 2023Article reuse guidelines:sagepub.com/journals-permissionsDOI: 10.1177/26350106231196300journals.sagepub.com/home/tde
AbstractPurpose: The purpose of this study was to determine whether COVID-19 impact and Diabetes Self-Management Education and Support (DSMES) service attendance predicted diabetes distress among individuals with type 2 diabetes during the pandemic.
Methods: Eighty-six adults with type 2 diabetes who either attended (n = 29) or did not previously attend (n = 57) DSMES services completed a cross-sectional survey. Participants’ mean age was 57 ± 12.3 years, 50% were female, and 71.3% were diagnosed with diabetes >5 years. The Coronavirus Impact Scale was used to measure impact of the pandemic on daily life. The Diabetes Distress Scale was used to measure distress overall and within 4 subscales (emotional burden, interpersonal distress, physician-related distress, regimen distress). Separate multiple linear regressions were conducted for each outcome, controlling for age, sex, marital status, financial status, and time since diabetes diagnosis.
Results: Higher COVID-19 impact predicted higher diabetes-related distress for all subscales and overall. Only the subscale for interpersonal distress was predicted by DSMES attendance, which decreased with DSMES attendance.
Conclusion: This study identifies a link between the effects of the COVID-19 pandemic and diabetes distress. The findings highlight the negative impact of the pandemic on diabetes distress and the importance of DSMES services for diabetes-related distress. Interventions are needed to reduce psychological distress among this population during public health crises.
Coronavirus disease-2019 (COVID-19) is a highly infectious novel respiratory disease caused by the severe acute respiratory syndrome-coronavirus 2 (SARS-CoV-2).1-4 Because people with underlying preexisting chronic illnesses, including diabetes, have had significantly higher rates of COVID-related morbidity and mortality, engagement in protective measures to reduce risk of contracting the disease has been particularly critical for this population.3,5,6 Protective measures to reduce the risk of contracting COVID-19 have focused on frequent handwashing, wearing a mask in public settings, and social distancing, which included maintaining a distance of 6 feet from others, avoiding crowds and poorly ventilated indoor spaces, quarantining if exposed to the virus, or isolating when infected with COVID-19.2,7,8 However, social distancing protective measures have the potential to disrupt access to self-management support services and may increase the risk for experiencing diabetes-related distress among those with diabetes.9
Many people with diabetes are at increased risk for experiencing diabetes distress, a psychological state characterized by anxiety, depression, frustration, and worry about diabetes-related health outcomes, access to care, and support.10,11 Diabetes distress occurs when an individual becomes emotionally burdened by the demands of managing their diabetes and can lead to the reduced ability to engage in self-management behaviors.11-13 The combined effects of stress associated with COVID-19 self-protective behaviors and worries about contracting the virus have led to concerns about increased rates of diabetes distress.14
The American Diabetes Association recommends all adults with type 2 diabetes participate in healthy lifestyle programs, including Diabetes Self-Management Education and Support (DSMES) services, to learn behavior change strategies that can foster individuals’ diabetes self-management and ability to cope with diabetes.15,16 The DSMES services foster healthy coping skills among individuals with diabetes to reduce the burden of psychosocial factors that interfere with an individual’s psychological well-being and provide strategies for coping with the constant demands associated with diabetes self-management that may contribute to diabetes distress.12 The Association of Diabetes Care and Education Specialists (ADCES) has identified 7 essential self-care behaviors (healthy coping, healthy eating, being active, monitoring, taking medication, reducing risks, and problem solving), referred to as the ADCES7 Self-Care Behaviors®.12 These provide the overarching framework for DSMES services.16 Emphasizing the importance of healthy coping among individuals with diabetes, the ADCES7 Self-Care Behaviors® were recently revised to place “healthy coping” at the forefront because this behavior has been determined to be a critical component for mastering the other behaviors.12
Examining the impact of COVID-19 and DSMES service attendance on diabetes distress among individuals with type 2 diabetes will provide insight into strategies to decrease diabetes distress, including during future pandemics. Therefore, the purpose of this study was to determine (1) the impact of COVID-19 pandemic on diabetesrelated distress (including emotional burden, interpersonal distress, physician-related distress, regimen distress, and overall distress) and (2) the effect of DSMES service attendance on diabetes distress during the pandemic.
A cross-sectional study design was used to capture participants’ self-management behaviors during the height of the COVID-19 pandemic, prior to the development of a vaccine, when social restrictions were most stringent. Participants with type 2 diabetes were recruited from an outpatient diabetes facility within an academic health science center. Participants were recruited between August 2020 and April 2021. Purposive sampling was conducted through review of patients’ electronic medical charts. The charts were screened by one of the authors to identify patients who were 18 years of age or older, diagnosed with type 2 diabetes, and had a working email address. Potential participants also needed to have access to a computer or other electronic device compatible with the survey system. Patients diagnosed with cognitive disorders documented in the electronic medical record that could prevent individuals from providing informed consent were excluded from participating in the study.
Approval for this study was obtained from the institutional review board of a large Southeastern public university prior to enrolling participants. Eligible participants were sent an email invitation to participate in the study that included a brief description of the study and a link to access the electronic consent form. After informed consent was obtained, participants were provided a link to the online survey comprised of sociodemographic and clinical history items and several scales related to diabetes management and coping. At completion of the survey, participants received a $10 electronic gift card as compensation for their time.
Sociodemographic information. Self-reported sociodemographic and clinical information included age in years, sex, race and ethnicity (dichotomized as “non-Hispanic White” and “other racial and ethnic groups” because the majority of participants were non-Hispanic White), and marital status (dichotomized as “married or cohabitating” with a partner and “single, widowed, divorced”). Self-reported education was dichotomized into “high school or less” and “some college or more,” and employment status was dichotomized into “employed” and “not employed.” Financial status was measured by asking participants to indicate whether their income was or was not sufficient to make ends meet each month, which is a more informative indicator of economic means.17,18 Responses were categorized as having “enough,” which included those who self-reported having more than enough financial resources to make ends meet or enough to make ends meet each month, and “not enough,” which included those who indicated they did not have enough financial resources to make ends meet each month. Diabetes duration was dichotomized as those diagnosed with diabetes within the past 5 years and those diagnosed longer than 5 years, a commonly used cut point for group comparisons among individuals with diabetes.19-21 Attendance of the DSMES services was dichotomized as those who had attended at least the first session of the DSMES services and those who had not attended any sessions because the foundations of diabetes self-management are typically addressed in the first session.22,23
Coronavirus Impact Scale. The Coronavirus Impact Scale was used to assess how COVID-19 impacted participants’ daily life. Using a 4-point Likert scale ranging from 0 (none/no change) to 3 (severe), this 12-item questionnaire asks individuals about changes to daily routines as a result of the COVID-19 pandemic; effect of the pandemic on family income and employment; interference with access to food, medical care, mental health resources, and social support persons; experiences of stress related to the pandemic; and whether the individual or their family had experienced symptoms or been diagnosed with COVID-19.24 Per Stoddard et al,24 the COVID-19 impact score was a sum of the first 8 items, ranging from 0 to 24, with higher scores indicating greater impact of the COVID-19 pandemic. Reliability studies for the Coronavirus Impact Scale achieved Cronbach’s alphas ranging from 0.71 to 0.81.24 In the present study, the Cronbach’s alpha was 0.70, indicating good internal consistency.
Diabetes Distress Scale. Diabetes distress was measured using the Diabetes Distress Scale. This 17-item instrument has been validated for both research and clinical use.10,11,25 Responses for the Diabetes Distress Scale are rated on a 6-point Likert scale with responses ranging from 1 (not a problem) to 6 (a very serious problem). Subscales for the Diabetes Distress Scale measure distress related to emotional burden (i.e., feeling overwhelmed by diabetes; 5 items), interpersonal distress (feeling a lack of support from significant others; 3 items), physicianrelated distress (concerns regarding access to care and medical trust; 4 items), and regimen-related distress (concerns regarding physical activity, diet and medication needs associated with diabetes self-management; 5 items).10 To measure overall diabetes distress, the 17 items were summed and then averaged to create a mean item score, with mean scores ≥3 indicating high levels of distress.10,25 Scores for diabetes distress subscales and overall distress score range from 1 to 6, with higher scores indicating higher levels of distress for those areas.10,25 Cronbach’s alpha for the scales were 0.77 for emotional burden, 0.70 for interpersonal distress, 0.66 for physician-related distress, 0.93 for regimen-related distress, and 0.94 for overall distress.
An a priori power analysis was conducted using nQuery Advisor, version 8.5, to determine the minimum sample size required to assess predictors of diabetes distress during the pandemic. Based on this analysis, we targeted a minimum sample size of 80 so that the linear regression F test would have at least 85% power to detect an R2 as small as 0.2 with up to 8 predictors in the model and an alpha level of 0.05. Descriptive statistics, including means and standard deviations or frequency distributions, were used to summarize the data. Bivariate analyses, including t tests and chi-square tests of association, were used to assess differences between those who had attended at least 1 DSMES class and those who had not. Multiple linear regression analyses were conducted to determine (1) whether COVID-19 pandemic predicted higher diabetes distress, comprised of emotional burden, interpersonal distress, physician-related distress, regimen distress, and overall distress, and (2) whether DSMES service attendance predicted lower diabetes distress during the pandemic. In each model, age, sex, marital status, financial status, and length of diabetes diagnosis were included as covariates because these factors can impact self-management adherence and diabetes-related distress.26-28 Because the majority of the sample self-identified as non-Hispanic White (89.5%), race and ethnicity were not included in the multiple linear regression analyses. An a priori alpha level of 0.05 was used to determine statistical significance. All analyses were conducted using SPSS, version 27.
Eighty-six participants with type 2 diabetes participated in the study. Participants ranged in age from 33 to 83 years (57 ± 12 years), and half were female (50.0%). The majority of the participants were married or cohabitating (69.8%) and reported having at least some college education (90.7%). Nearly one third (30%) of participants were diagnosed with type 2 diabetes ≤5 years and were significantly more likely to have attended at least 1 DSMES class than those who were diagnosed with diabetes >5 years. Those who reported attending at least 1 DSMES class had significantly lower distress scores for all subscales and overall distress compared to those who had not attended. There were no significant differences in sociodemographic or clinical variables of interest or COVID-19 impact between those who had or had not attended DSMES services (Table 1).
Results for multiple linear regression analyses examining attendance of DSMES services and COVID-19 impact on diabetes distress are presented in Table 2. The model for diabetes distress related to emotional burden was significant, F(7, 78), 5.98, P < .001, with an R2 of .35. Attendance of at least 1 DSMES class was not a significant predictor of diabetes distress related to emotional burden; however, impact of COVID-19 predicted emotional burden with every 1-point increase in the COVID-19 impact score predicting a nearly 1-point increase in emotional burden score (95% CI, 0.57-1.35, P < .001).
The model for interpersonal distress was significant, F(7, 78), 6.38, P < .001, and accounted for 36.4% of the variation in interpersonal distress. Both COVID-19 impact and attendance of DSMES services predicted interpersonal distress. Those who had attended at least 1 DSMES class had a 0.41-point decrease in interpersonal distress (P = .038) compared to those who had not attended at least 1 DSMES class. At the same time, for every 1-point increase in COVID-19 impact, there was a 1.04-point increase in interpersonal distress (95% CI, 0.62-0.46, P < .001).
The model for physician-related distress was significant, F(7, 78), 5.80, P < .001, and accounted for 34.2% of the variance in physician-related distress scores. Impact of COVID-19 significantly predicted physician-related distress, with a 1-point increase in COVID-19 impact leading to a 1.05-point increase in score on physician-related distress. Attendance of at least 1 DSMES class was not a significant predictor of physician distress.
The model for diabetes distress caused by regimen was significant, F(7, 78), 6.72, P < .001, and accounted for 37.6% of the variance in regimen distress scores. Attendance of at least 1 DSMES class was not a significant predictor of diabetes regimen distress; however, impact of COVID-19 significantly predicted diabetes distress related to regimen, with a 1-point increase in COVID-19 impact leading to a 1.64-point increase in regimen distress (95% CI, 1.05-2.23, P < .001).
The model for overall diabetes distress was significant, F(7, 78), 7.37, P < .001, and accounted for 39.8% of the variation in overall distress scores. Attendance of at least 1 DSMES class was not a significant predictor of overall diabetes distress. In contrast, impact of COVID-19 significantly predicted overall diabetes distress, with a 1-point increase in COVID-19 impact related to a 1.19-point increase in overall diabetes distress (95% CI, 0.78-1.61, P < .001).
Higher COVID-19 impact was associated with greater emotional distress, a finding that is supported by results of other studies that have demonstrated that throughout the early phases of the pandemic, people generally felt over-whelmed.29-31 Given the frequent reports of those with diabetes being at higher risk for COVID-19 and more likely to experience severe symptoms or death, the sense of feeling overwhelmed was even more likely among persons with diabetes compared to the general population,14 as also suggested by our findings. Furthermore, previous studies have reported that limited access to psychosocial supports resulting from the pandemic was likely to have contributed to psychological and emotional distress, which may contribute to the reports of greater emotional distress associated with higher COVID-19 impact in the present study.31
Higher COVID-19 impact also predicted greater interpersonal distress. Social isolation measures instituted to reduce the spread of SARS-CoV-2 disrupted normal social interactions and limited use of social support systems as a coping mechanism that is associated with positive mental health outcomes during a pandemic.32,33 The social isolation used for preventing the spread of SARS-CoV-2 has been associated with increased psychological distress, depression, anxiety, and reports of loneliness among adults with diabetes31 and in the general US adult population.29,30 Attendance of DSMES services, while not predictive of other forms of distress, did predict a decrease in interpersonal distress. This may be attributable to the fact that a central component of DSMES is the assessment and identification of social support resources.16
COVID-19 impact was a significant predictor of physician-related distress, with higher COVID-19 predicting greater physician-related distress. Access to care throughout the pandemic was severely limited for everyone.34 For people with a chronic condition, this limitation was not just an inconvenience but had the potential to be lifethreatening, as evidenced by the significantly higher rates of death among patients with chronic conditions, including diabetes.34,35 Access to care is a well-studied social determinant of health with decreased access, even in the best of times, being associated with poor health outcomes in people with diabetes.36,37 People with higher COVID-19 impact may also have experienced greater physician-related distress because of the messaging ambiguity that resulted from practitioners’ own ambiguity regarding preventive measures.38
Higher COVID-19 impact was predictive of greater diabetes self-management regimen distress, while DSMES attendance itself was not predictive of regimen distress. This result is likely due to the significant disruption in access to self-management resources during the pandemic.39 Not only would the impact of this disruption be unaffected by attendance of DSMES service, but DSMES services were themselves disrupted during the pandemic.16,39,40
This study identifies a link between the myriad effects of the global pandemic and diabetes distress. A limitation of the study is that the amount of time of DSMES service attendance was not recorded, so we could not assess dose response. Although it would be beneficial if dose response were to be examined in future studies, this study provides novel insight into the impact of COVID-19 and DSMES service attendance on diabetes distress during the pandemic, for which current research is limited. Additionally, it is important to note that the majority of the sample self-identified as non-Hispanic White, which is representative of the general population in Kentucky. Given the ongoing nature of the COVID-19 pandemic, it will be important to replicate this study with a more diverse sample.
It is also important to note that none of the diabetes distress subscale scores nor the overall distress score reached the cutoff point for clinical significance, which is defined as a distress score greater than 3.0.25 Most studies have measured only the overall distress score, while little attention has been given to each component that contributes to overall distress and the degree to which they contribute. The uniqueness of this study is the examination of the subtypes of diabetes distress and how these forms of diabetes distress contribute to diabetes self-management. Considering COVID-19 impact significantly predicted all subscales of distress and overall distress, this may indicate the Diabetes Distress Scale captured general diabetes-related distress but not the specific types of distress experienced by individuals with type 2 diabetes during the pandemic. This highlights the need for the development of a diabetes-related distress scale that assesses the specific types of distress experienced during times of crisis.
The COVID-19 pandemic brought dramatic disruptions to daily routines, access to resources, and interpersonal support, potentially contributing substantial psychosocial burden not only to the general population but perhaps in particular to those at higher risk for experiencing these burdens, such as those with chronic illnesses like diabetes.32 The findings from the present study indicate that a greater impact of COVID-19 on participants’ lives predicted increased diabetes distress overall and across subscales for emotional burden, physician distress, regimen distress, and interpersonal distress. At the same time, attendance of DSMES services had a protective effect on interpersonal distress during the pandemic, likely due to the social support component of the services. These findings suggest the importance of understanding the impact of the COVID-19 pandemic on diabetes distress among patients with type 2 diabetes and indicate a need for interventions aimed at improving healthy coping, including access to social support, during times of crisis. Given that COVID-19 impact significantly predicted all subscales of diabetes distress and overall distress but did not reach the level of clinical significance, there is a need for the development of a diabetes-related distress scale that assesses the specific types of distress experienced during times of crisis. Additionally, the findings of the present study in combination with what is known about the higher risk for mental health issues among individuals with type 2 diabetes highlight the need for interventions aimed at decreasing diabetes-related distress particularly when access to resources supporting healthy coping is limited.
Of note, studies examining the negative effects of past national emergencies, such as those occurring after natural weather events, on diabetes-related outcomes showed worsening diabetes management, significant increases in A1C levels, and increased rates of disease-related complications and mortality after these events.39,41,42 Given this and the 2020 Consensus Report on diabetes self-management education that identifies major stressors as a critical time in which adults with type 2 diabetes should be referred to DSMES services, advanced planning for circumstances that could disrupt services and policies and evidence-based strategies that mitigate the risks of disrupted access to self-management resources during times of crisis are needed.9,16
We would like to thank the UK Healthcare Barnstable Brown Diabetes Center for their collaboration in this project.
The authors declare no conflicts of interest.
This research was supported through funding provided by the Jonas Nurse Scholars Program and the University of Kentucky College of Nursing.
Leigh Anne Koonmen https://orcid.org/0000-0002-9818-3647
From Kirkhof College of Nursing, Grand Valley State University, Grand Rapids, Michigan (Dr Koonmen); College of Nursing, University of Kentucky, Lexington, Kentucky (Dr Lennie, Dr Hieronymus, Dr Rayens, Dr Miller, Dr Mudd-Martin); and College of Education, College of Nursing, University of Kentucky, Lexington, Kentucky (Dr Ickes).
Corresponding Author:Leigh Anne Koonmen, Cook-DeVos Center for Health Sciences, Grand Valley State University, 301 Michigan St NE, Ste. 410, Grand Rapids, MI 49503, USA.Email: koonmele@gvsu.edu