Yun Shi,1,2 Chan Wang,2 Mary Ann Sevick,1– 3 Han Bao,4 Xinyi Xu,1,2 Yulin Jiang,1,2 Ziqiang Zhu,5 Ashley Wei,1,2 Naumi M Feldman,6 Lu Hu1,2

1Center for Healthful Behavior Change, Institute for Excellence in Health Equity, NYU Langone Health, New York, NY, USA; 2Department of Population Health, NYU Grossman School of Medicine, NYU Langone Health, New York, NY, USA; 3Department of Medicine, NYU Grossman School of Medicine, NYU Langone Health, New York, NY, USA; 4Jacobi Medical Center, New York, NY, USA; 5Wellsure Medical Practice, New York, NY, USA; 6Charles B. Wang Community Health Center, New York, NY, USA

Correspondence: Lu Hu, Center for Healthful Behavior Change, Institute for Excellence in Health Equity, NYU Langone Health, 180 Madison Ave, New York, NY, 10016, USA, Tel +1 646-501-3438, Email [email protected]

Purpose: The purpose of this study is to describe diabetes distress and related factors among Chinese Americans with type 2 diabetes in New York City (NYC).
Methods: We conducted a secondary data analysis of the baseline data from three research studies conducted among community-dwelling Chinese American adults with type 2 diabetes. Diabetes Distress Scale (DDS) was used to measure sources of diabetes distress including emotional-, regimen-, interpersonal-, and physician-related distress. A score of 2 or greater indicates moderate diabetes distress or higher. Patient Health Questionnaire-2 (PHQ-2) was used to measure depressive symptoms. Participants’ sociodemographic information was also collected. Descriptive statistics were used to describe diabetes distress, and logistic least absolute shrinkage and selection operator (LASSO) regression was used to examine factors associated with diabetes distress level.
Results: Data from 178 participants (mean age 63.55± 13.56 years) were analyzed. Most participants were married (76.40%), had a high school degree or less (65.73%), had a household annual income Conclusion: Diabetes distress is prevalent among Chinese immigrants with type 2 diabetes, especially emotional- and regimen-related distress. Given the known link between diabetes distress and poor glycemic control, it is critical to screen for diabetes distress at primary care clinics and incorporate psychological counseling in diabetes care in this underserved population.

Keywords: Chinese Americans, immigrant health, ethnic minority, diabetes distress, psychological burden, mental health, stress, emotional distress

In the United States, Asian American is the fastest-growing minority group, and Chinese American is the largest Asian subgroup.1 According to a 2022 report, 33.8% and 13.3% of Chinese Americans aged 45–64 have prediabetes and type 2 diabetes, respectively.2 A significant portion of Chinese Americans are low-income, foreign-born immigrants with limited English proficiency.3 Aside from diabetes per se, social determinants of health factors such as socioeconomic disadvantages, language barriers, limited health literacy, and cultural differences contributed to poor diabetes self-management behaviors and led to suboptimal diabetes control in this underserved population.4,5

While improving diabetes control is the central goal of diabetes care, healthcare providers and researchers have begun to realize that screening and care for psychological distress in patients with diabetes are of vital importance. Patients with diabetes experience stress due to the demands of diabetes management, fears about care guidelines not being closely followed, worries that healthcare providers are not taking them seriously, and frustrations over how others do not understand their difficulties.6 Importantly, elevated level of diabetes distress impedes self-care behaviors, such as diet, physical activity, and medication adherence,7–9 which were linked to poor glycemic control. Evidence showed that the prevalence of diabetes distress among adults with type 2 diabetes can be as high as 79.5% in non-Hispanic whites (82% of the sample).10 Given the accumulating evidence demonstrating the important role of diabetes distress, the American Diabetes Association called for researchers and clinicians to screen for and develop treatment plans for patients with elevated diabetes distress. Therefore, understanding diabetes distress and its related factors is necessary to achieve optimal diabetes outcomes.

While the literature on diabetes distress is growing, limited data and research studies have been conducted in Chinese Americans with type 2 diabetes. Considering the high and unique burden this population faces, it is crucial to understand their distress to develop targeted interventions suitable for them. This study, therefore, aims to describe diabetes distress among Chinese Americans with type 2 diabetes living in NYC and to explore associated factors. By “Chinese Americans”, we refer to individuals of Chinese ethnicity, whether they were born in the US or elsewhere. Information regarding the prevalence and common sources of diabetes-related distress and associated factors can enhance healthcare providers’ awareness of this problem, better equipping them to identify at-risk individuals and treat them appropriately.

Materials and Methods Study Design

We conducted a secondary data analysis on the baseline data derived from three small-scale research studies conducted at different times among Chinese Americans with type 2 diabetes living in NYC. The first study is a cross-sectional survey that investigated type 2 diabetes management behaviors and the current use of mobile health (mHealth) for diabetes management.11 The other two studies are pilot randomized controlled trials that aimed to examine the potential efficacy of culturally-tailored and linguistically-adapted mHealth interventions on glycemic control in Chinese Americans with type 2 diabetes.12,13 Between 2018 and 2022, participants were recruited from several community centers in Chinatown areas in NYC using flyers, direct referrals from providers, and NYU Langone Health Electronic Medical Records. Participants’ diabetes distress, depressive symptoms, and demographic information were collected using standardized questionnaires and information intake sheets. The study materials were available in English, Mandarin, and Cantonese, and a bilingual community health worker administered surveys in the participant’s preferred language. The Institutional Review Board of the sponsored university approved the study protocols (protocols s17-01696, s18-00609, and s19-01275). All participants provided informed consent before study entry.

Participants

In general, to be eligible for the study, participants must: 1) self-identify as Chinese American, 2) be 18 years of age or older, 3) be able to speak and understand Mandarin (only apply to the two pilot randomized controlled trials), 4) self-report or have a medical diagnosis of type 2 diabetes, and 5) be currently living in the community (ie, not institutionalized) and self-managing type 2 diabetes at home. Those who were unable or unwilling to provide informed consent and who had gestational diabetes were excluded from the study. Additional details regarding the inclusion and exclusion criteria for each study have been reported elsewhere.11,14,15

Measures Diabetes Distress

Diabetes distress was assessed at baseline using the 17-item Diabetes Distress Scale (DDS).6 Using the 4 subscales in DDS, participants report distress experienced within the past month, including emotional distress, physician-related distress, regimen-related distress, and interpersonal distress. The items are scored on a 6-point Likert scale, ranging from 1 (not a problem) to 6 (a very serious problem), with a higher score reflecting greater diabetes distress. Item responses were averaged to generate a total score and subscale scores. A total score or subscale score ≥ 2 indicates a moderate or higher distress level and is considered clinically important.16 In this report, dummy variables of overall diabetes distress level and subscale distress levels were generated using this cutoff point to explore diabetes distress-related factors. The total score and subscale scores were also reported. Cronbach’s alpha coefficient was used to assess the internal consistency of the 17-item DDS. In the current sample of 178 observations, the Cronbach alpha value for the full DDS was 0.92, with subscales having Cronbach alpha values ranging from 0.77 to 0.85.

Depressive Symptoms

Depressive symptoms were measured using Patient Health Questionnaire-2 (PHQ-2).17 PHQ-2 is a 2-item scale that measures the frequency of depressive symptoms and is usually used for screening purposes. PHQ-2 scores range from 0 to 6, with higher scores indicative of greater severity. A score ≥ 2 has good sensitivity in detecting elevated depressive symptoms.18 The current study used a cutoff of 2 to distinguish people who experienced depressive symptoms more frequently from those who did not. In the current sample of 175 observations, the Cronbach alpha value of the PHQ-2 was 0.82, indicating good internal consistency.

Sociodemographic Characteristics

Age, gender, marital status, education, annual household income, employment status, duration of residence in the United States, and English proficiency were obtained using a baseline sociodemographic questionnaire.

Statistical Analysis

Descriptive statistics were conducted for all variables in the study. Mean (standard deviation) was reported for normally distributed continuous variables, median (IQR) was reported for the skewed continuous variables, and frequency (percentage) was reported for categorical variables. Considering the clinical relevance and distribution of the overall diabetes distress scores, diabetes distress was included in the further analysis as a binary variable, coded 0 representing normal or mild distress level, and 1 representing moderate or higher distress level. Logistic least absolute shrinkage and selection operator (LASSO) regression was used to select the most valuable factors related to diabetes distress. The LASSO penalty reduces the coefficient value toward zero, thus allowing the less contributing variables to have a zero coefficient and effectively perform feature selection. The analysis was conducted on complete data (n = 172). The following variables were included in the model: age, gender, marital status, education, employment status, duration of residence in the United States, English proficiency, and depressive symptoms. The penalty term lambda (λ) was selected by running ten-fold cross-validation 100 times. In our study, the lambda.min (ie, the value of λ that gives minimum mean cross-validated error) was 0.0227. All analyses were performed using R 4.2.119 and logistic LASSO regression was conducted using package “glmnet” 4.1–6.20

Results

Data from 178 Chinese immigrants with type 2 diabetes were included in this analysis. Table 1 shows the participants’ characteristics. All of the participants (mean age 63.55±13.56 years) were foreign-born, most were currently married (76.40%), had a high school education or less (65.73%), and had a household annual income < $25,000 (70.25%). Despite having resided in the United States for an average of 19.10±12.96 years, 93.22% of them reported limited English proficiency. Overall, 24.00% of participants experienced elevated depressive symptoms and 25.84% reported moderate or higher overall distress levels. As shown in Table 2, the most common sources of distress were emotional burden (29.78%), followed by regimen (28.65%), interpersonal (18.54%), and physician-related distress (14.04%).

Table 1 Demographic Characteristics, Depressive Symptoms, and Diabetes Distress

Table 2 Diabetes Distress Subscale Scores and Distress Levels by Distress Sources

Table 3 shows the coefficients of variables in LASSO regression at λ = 0.0227. The results identified age, gender, limited English proficiency, and depressive symptoms as being correlated with diabetes distress levels. Those who were younger (OR = 0.98), female (OR = 0.57), limited English proficiency (OR = 1.05), or had elevated depressive symptoms (OR = 5.58) had higher diabetes distress levels than older, male, English proficient participants with little or no depressive symptoms. Marital status, education, employment status, and duration of residence in the US were not significantly correlated.

Table 3 The Estimated Coefficients for Logistic Least Absolute Shrinkage and Selection Operator (LASSO) Regression

Discussion

This study described diabetes distress and its associated factors among Chinese immigrants with type 2 diabetes in NYC. Approximately 25.8% of the participants had moderate or high distress levels, which is consistent with the rates reported in a meta-analysis.10 A recent study in Chinese Americans with type 2 diabetes found a diabetes distress rate of 57.6%.21 The different results might arise from the fact that most of our participants live in Chinatowns in NYC, so they may feel more supported than those in Huang et al’s study, which recruited participants from three cities in Texas. NYC’s Chinatowns are ethnic enclaves with a long history and a high concentration of Chinese Americans. Chinese Americans living in areas with higher ethnic density report more social support and fewer depressive symptoms compared to non-ethnic enclave residents.22,23 Hence, participants of our study may feel more accepted and receive more support from the community in general and when dealing with diabetes. Nonetheless, our data along with data from Huang et al indicated that diabetes distress is a prevalent issue among Chinese Americans with type 2 diabetes.

The most common source of diabetes distress was emotional distress, with 30% of the participants reporting moderate to high levels. The relatively high rate of emotional distress may be attributed to the fact that Chinese culture tends to view mental health issues and emotional needs negatively, resulting in most emotional distress being left unresolved. A secondary analysis of data from a national survey of Chinese Americans revealed that among 1747 respondents aged 18–65, 75% never sought any type of help (formal or informal) for emotional or mental health issues, and only 15% of those with mental health disorders sought mental health services.24 Many people hide and deny their mental health problems25 or conceal their feelings of sadness and other negative emotions26,27 out of shame and fear of discrimination. As a result, they often avoid seeking help when they are emotionally distressed.28 According to Abe-Kim et al, only 3.6% of Chinese American participants in their study sought help for emotional distress. This is because Chinese people tend to prefer dealing with mental health issues on their own and lack confidence in and perceive a low need for professional mental health treatment.25 Therefore, it is crucial to provide mental health education, culturally appropriate screening, and treatment for this population to raise awareness of mental health issues and the importance of professional care. Potential strategies include engaging primary care providers, who are often regarded as trusted authorities in Chinese culture, to screen and address mental health issues. For example, screening for diabetes distress could be conducted in the waiting area while patients await their visits with their primary care doctors. Afterward, doctors can review the results and determine if further action is required.

Following emotional distress, a similar proportion of participants (29%) reported moderate or high regimen-related distress, and “Feeling that I am not sticking closely enough to a good meal plan.” was the second highest scoring item on the Diabetes Distress Scale. Participants’ regimens and diet concerns might also be related to Chinese culture. Diabetes management curricula typically focus on Western diets and lifestyles, and their dietary recommendations do not always reflect Chinese immigrants’ dietary practices. Thus, Chinese immigrants often find it difficult to translate these recommendations within Chinese culture.29,30 In addition, social elements of meals make it difficult for people to follow an appropriate diet.31 The plate method technique, for instance, allows people to manage well-balanced meals by filling their plates with different types of food before eating. However, Chinese people typically dine family style, eating from common plates and not assembling their own. In Chinese culture, the plate method may be considered impolite, so people may not follow it. Raising public awareness about healthy plates and developing culturally tailored programs are critical for promoting healthy dietary intake among Chinese immigrants with type 2 diabetes.

In the current sample, younger age and female gender are related to higher chances of diabetes distress. These results are consistent with previous findings.10,32–34 Our findings indicate that the likelihood of experiencing high diabetes distress decreases as age increases. Managing diabetes will likely contribute to the stress and burden that younger people with diabetes already experience due to their families, jobs, and finances, whereas Medicare may alleviate some older adults’ financial burdens by covering diabetes management expenses. The gender difference could be due to that women are more concerned about diabetes, more sensitive to symptoms, and more likely to discuss health issues.35 It is also possible that men refused to admit distress because it is perceived as a weakness in masculinity.36 To reduce diabetes-related distress in the younger and female subgroups, it is critical to identify the particular diabetes-related stressors they face and identify the social support available to them.

It is not surprising that individuals with limited English proficiency (LEP) are more likely to experience diabetes distress, given that LEP is a significant social determinant of health that leads to health disparities and restricted access to healthcare. Latino and Asian Americans with LEP experience higher levels of psychological distress,37 and those with mental health issues are less likely to identify a need for mental health services and use mental health services, which leads to a longer duration of untreated disorders.38 Our finding suggests that LEP may exacerbate the psychological burden of diabetes management, leading to higher levels of distress. Therefore, addressing communication barriers through interventions may be crucial in reducing diabetes distress among Chinese Americans with LEP.

This study also found a relationship between diabetes distress and depressive symptoms. This supports previous studies that diabetes distress and depression, another common psychological condition associated with type 2 diabetes, are partially overlapped constructs that can exist together, occur separately, or be presented differently.10,39 In the current sample, 24% reported elevated depressive symptoms, 25.8% reported diabetes distress, and 13.7% reported both. Studies have also shown that depression is negatively related to glycemic control and self-care behavior of Chinese with type 2 diabetes.7,40 When assessing the psychological status of Chinese people with type 2 diabetes, both diabetes stress and depression should be considered. Both conditions must also be differentiated so that appropriate interventions can be provided.

This is the first study to examine the common sources and associated factors of diabetes distress in Chinese immigrants with type 2 diabetes. The findings of this study can help to identify at-risk population for high level of diabetes distress. There are some limitations worth noting. First, the small sample size from one urban city limits the generalizability of findings to all Chinese immigrants with type 2 diabetes. Further, the cross-sectional survey may include multiple participants from the same family that share similar distress levels, but we did not conduct subgroup analysis due to the small sample size. Future studies should explore diabetes distress at the family level, considering the family-oriented nature of Chinese culture. In addition, this study was unable to examine some possible factors associated with diabetes distress due to the use of secondary data. These factors include diabetes control, diabetes duration, diabetes complications, sedentary lifestyles, and psychosocial factors (eg, family support).32,41 A mixed-methods study incorporating these factors is warranted to disentangle the association between diabetes management experiences and mental distress. We employed LASSO regression to identify key factors associated with diabetes distress, as it is a rigorous method for feature selection. While LASSO may slightly underestimate effect sizes, this is unlikely to significantly impact our results given the small sample size. We also recognize that several of the categorical variables are correlated, which may introduce bias into the model. While LASSO can handle correlated predictors to a certain degree, our findings should be validated with a larger sample.

Conclusion

The current study found diabetes distress was high among Chinese immigrants with type 2 diabetes. The most common sources of diabetes distress among this population are emotional burdens and regimen-related distress. Female gender, younger age, and those with limited English proficiency and elevated depressive symptoms are more likely to experience diabetes distress. The results of this study suggest that mental health issues should be screened and addressed as part of diabetes assessment and treatment. We propose screening for diabetes distress while patients are in the waiting area to see their primary care doctors. Doctors can review the results and decide whether further action is needed. It also shows the need for mental health interventions in low-income Chinese immigrants with type 2 diabetes and identifies the at-risk groups that require greater attention.

Research Ethics and Patient Consent

This study complies with the Declaration of Helsinki and the study protocols were approved by the New York University Grossman School of Medicine Institutional Review Board (s17-01696, s18-00609 and s19-01275). All participants provided informed consent before study entry.

Acknowledgment

The abstract of this paper was presented at the American Diabetes Association 83rd Scientific Sessions as a poster presentation with interim findings. The poster’s abstract was published in “Poster Abstracts” in Diabetes: https://doi.org/10.2337/db23-655-P

Funding

Dr. Lu Hu received support from Grants NIH R01MD017579, AHRQ 1R18HS029813, NIH K99MD012811, NIH R00MD012811, American Diabetes Association 7-22-ICTSN-08, NIH P50MD017356 pilot award, NIH U54MD000538-15 pilot award, and NIH P30DK111022 pilot award. The views of this study are those of the authors and do not necessarily represent the views of the NIMHD, the NIDDK, the NHLBI, the NIH, the US Department of Health and Human Services, and the American Diabetes Association.

Disclosure

LH reports holding stock in Tencent Holdings Limited. The authors report no other conflicts of interest in this work.

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