Background: Diabetes distress is associated with poor diabetes self-management and worse clinical outcomes. Whether there is an association between patient experience of health care and degree of emotional burden (EB) of diabetes distress is not known.
Objective: To investigate whether aspects of culturally competent care are associated with the EB of diabetes distress.
Design: Cross-sectional survey consisting of face-to-face interviews.
Subjects: A total of 502 ethnically diverse patients with diabetes receiving care in safety-net clinics in 2 cities.
Measures: The main outcome measure was high EB on the Diabetes Distress Scale (mean score ≥3). The predictors were 3 domains (Doctor Communication—Positive Behaviors, Trust, and Doctor Communication-Health Promotion) of the Consumer Assessment of Healthcare Providers and Systems—Cultural Competence (Consumer Assessments of Healthcare Providers and Systems’ Cultural Competence Item Set) instrument.
Results: Of 502 patients, 263 (52%) reported high EB. In adjusted logistic regressions controlling for sociodemographic and clinical factors, patient report of optimal Doctor Communication-Positive Behaviors (adjusted odds ratio, 0.46; 95% confidence interval, 0.39–0.54), and optimal Trust (adjusted odds ratio, 0.65; 95% confidence interval, 0.54–0.78) were associated with lower EB. Doctor Communication-Health Promotion Communication was not associated with EB.
Discussion: Patient report of better doctor communication behavior and higher trust in physician are inversely associated with high EB among patients with diabetes. Further research should determine whether interventions improving patient physician communication and trust can lower the EB of diabetes.
*Joint Medical Program, University of California, San Francisco & Berkeley, CA
†Departments of Medicine and Population Health Sciences, University of Wisconsin School of Medicine and Public Health, WI
‡School of Public Health, University of California, Berkeley
Departments of §Family and Community Medicine and Psychiatry
∥Internal Medicine, San Francisco General Hospital, University of California, San Francisco, CA
Supported by Russell Sage Foundation, Commonwealth Fund, Arnold P. Gold Foundation, UCSF Dean’s Summer Research Fellowship Program, and UCB-UCSF Smith Thesis Research Fellowship Program.
The authors declare no conflict of interest.
Reprints: Alicia Fernandez, MD, Department of Internal Medicine, San Francisco General Hospital, University of California, San Francisco, P.O. Box 1364, CA 94143. E-mail: firstname.lastname@example.org.
Diabetes distress is defined as emotional and mental distress directly stemming from type 2 diabetes and its self-management.1 It is associated with worse diet and less exercise,2 worse lipid control,2 and worse glycemic control.3 The mental and emotional burden (EB) of diabetes distress may diminish patients’ motivation for following the numerous health practices central to diabetes control.2 Better doctor-patient relationships may alleviate or prevent the EB of diabetes; however, there has been little investigation of this relationship. Culturally competent care, with its emphasis on patient physician communication and trust, may lessen the EB of diabetes by making patients more comfortable sharing distressing experiences or discussing illness-related fears and anxieties. Culturally, competent care has been defined as care that is “safe, patient and family centered, evidence-based, and equitable” for diverse populations.4 Investigating the relationships between several important facets of culturally competent care (such as Doctor Communication—Positive Behaviors, Trust, and Doctor Communication—Health Promotion) and the EB of diabetes distress may be particularly important among ethnically diverse patient populations where diabetes is highly prevalent and diabetes knowledge is often low.5,6
Diabetes distress is correlated with depressive symptoms, and patients commonly experience both diabetes distress and major depression.7,8 However, diabetes distress is a distinct condition,3 and may be more strongly associated with poor health outcomes and diabetes self-management than major depressive disorder.7,9 Depression is also known to influence patient perception of care.5,10 Thus, it is important to examine the relationships between aspects of the doctor-patient relationship and the EB of diabetes separate from the experience of depression.
We used data from a survey study of an ethnically diverse sample of patients with type 2 diabetes to examine if patients’ perceptions of aspects of culturally competent care were associated with reports of high EB stemming from diabetes.
Study Design, Setting, and Participants
We analyzed data from the Immigration, Culture, and Health Care (ICHC) study. The ICHC study is a cross-sectional study of African American, Spanish-speaking and English-speaking Mexican American, and non-Hispanic white adults with diabetes who received care in 9 free-standing or hospital-based safety-net clinics in the San Francisco Bay Area and Chicago in 2008–2009. The main purpose of the ICHC was to explore factors that impact diabetes self-management and health outcomes in minority populations. To be included in the study, patients had to have type 2 diabetes, be 18 years of age or older, and speak English or Spanish. Exclusion criteria, assessed by trained interviewers before study enrollment, included cognitive impairment, active substance abuse, or psychosis severe enough to interfere with survey administration. Recruitment was stratified by race/ethnicity and patient language to ensure a diverse sample. The participation rate among eligible patients was 91%. For this specific study, we removed respondents who stated that they did not have a regular primary care provider (N=111) or respondents who met criteria for severe depression by survey response (N=98) with a score ≥15 on the Patient Health Questionnaire-9,11,12 leaving us with a sample size of 502.
After providing written informed consent in English or Spanish, participants completed an in-person survey with a trained, bilingual, and bicultural research assistant. Clinical data was abstracted from participants’ electronic health record. The values for glycosylated hemoglobin (A1C), low-density lipid cholesterol, and systolic blood pressure recorded within 1 year prior and closest to the date of the interview were abstracted. This Institutional Review Boards at the University of California San Francisco, the Cook County Health and Hospital System, and the participating institutions in Chicago and the San Francisco Bay Area approved all study activities.
We used 3 domains of the Consumer Assessments of Healthcare Providers and Systems’ Cultural Competence Item Set (CAHPS-CC) to measure patient reports of aspects of culturally competent care. CAHPS-CC is a 26-item set designed to measure a patient’s overall experience of his/her physician’s interpersonal and cultural competence and a patient’s experience of the physician’s office. Items were developed through extensive cognitive interviewing, field testing, and rigorous translation described in detail elsewhere.13 Factor analysis showed that CAHPS-CC had a first-order factor structure in which the unidimensional measure comprised of 7 domains of which 3 had acceptable psychometric properties in this population14: Doctor Communication—Positive Behaviors (5 items), Trust (5 items), and Doctor Communication—Health Promotion (4 items). The Doctor Communication-Positive Behaviors domain comprised of items that asked patients about the extent to which their provider exhibited several aspects of good communication behavior, including listening carefully, showing respect, and spending adequate time with the patient. The Doctor Communication-Health Promotion domain was comprised of items that asked patients about the extent to which their provider discussed a number of health and wellness behaviors, including physical activity, depression, and healthy diet. The CAHPS-CC Trust domain comprised of items aimed to assess the patient’s trust in their physician, including the extent to which they feel like they can tell their provider anything, tell their provider the truth about their health, and trust their provider with their medical care. We rescaled each of the 3 domains onto a 0–100 scale, with higher scores representing greater culturally competent care. A more in-depth description of the CAHPS-CC is reported elsewhere.13
As seen in other studies of doctor-patient interactions, patient reports were heavily skewed towards positive responses.15,16 Therefore, we dichotomized responses into 2 categories: the upper 25% (optimal) and the lower 75% (suboptimal) range. Optimal exposures were coded as a 1, meaning that greater Doctor Communication—Positive Behaviors, greater Trust, and increased Doctor Communication—Health Promotion were coded as 1; whereas suboptimal reports were considered the reference category and coded as 0.
EB reflects the emotional and mental distress associated with the management of diabetes. We used the EB subscale of the 17-item validated Diabetes Distress Scale as our measure of emotional distress.2 The 5 Likert-style questions in the EB subscale ask respondents to identify the degree to which feelings of diabetes-related stress are problematic, ranging from 1 (not a problem) to 6 (a serious problem). Questions included: “feeling that diabetes is taking up too much of my mental and physical energy every day,” “feeling angry, scared, and/or depressed when I think about living with diabetes,” “feeling that diabetes controls my life,” “feeling that I will end up with serious long-term complications, no matter what I do,” and “feeling overwhelmed by the demands of living with diabetes.” Responses to the 5 items were averaged. A mean EB score ≥3 was interpreted as constituting significant or high EB.17 A high EB score was coded as 1, whereas no/low EB was considered the reference category.
Demographics and Diabetes-related Variables
Variables included: patient sex, age (y), self-identified race/ethnicity (African American, Mexican American, or white), English proficiency (report of speaking English “well” or “very well” vs. “not well” or “not at all”), highest level of education achieved (incomplete high school, high school completed/general educational development, or some advanced degree), city of recruitment (San Francisco Bay Area vs. Chicago), self-report of specific comorbidities (0–6: myocardial infarction, transient ischemic attack/stroke/cerebrovascular accident, cancer, hypertension, arthritis, and hypercholesterolemia), self-report of years since diabetes diagnosis (continuous variable), and body mass index (calculated from clinical data obtained at the last office visit before survey).1,5,18
We compared the high EB and low EB groups using χ2 and t tests. We then examined how each of the 3 CAHPS-CC domains were associated with high EB using logistic regression models to control for clinical covariates (years since diabetes diagnosis, number of comorbidities, and body mass index) and sociodemographic covariates (sex, age, self-identified race/ethnicity, language, highest level of education achieved, and city of recruitment). Exploratory tests for effect modification were conducted to ascertain the presence of interaction effects. Because the patients were sampled from 22 clinics, we adjusted the SEs for intracluster correlation using the Huber-White sandwich estimator.19 Linearity checks were performed for continuous variables (years since diagnosis, comorbidities, body mass index, and age) by plotting the log odds of EB against categorized versions of these variables. STATA 11 was used to perform all analyses.19
Table 1 displays the characteristics of the 502 participants in the sample. The mean age was young (55.7 y) and the patient ethnicity was diverse: 31% of participants were African American (N=158), 54% were Mexican/Mexican American (N=270), and 27% of the study population was Spanish speaking (N=135). Educational achievement was low, with 39% reporting not having completed high school. The patients were predominantly low income: 75% reported an annual household income <$25,000. Slightly more than half (52%) had high EB from diabetes distress (Table 1). In bivariate analyses, patients who reported high EB were more likely to be younger (53.8 vs. 57.8; P=0.0001), Spanish speakers (33% vs. 20.5%, P=0.002), single (27% vs. 20%, P=0.019), and live in the Bay Area (51% vs. 49%; P=0.019).
Predictors of High EB
In χ2 tests comparing patients with high EB to those without (Table 2), patients who reported high EB were less likely than patients with low EB to report optimal Doctor Communication—Positive Behaviors (31% vs. 52%, P<0.001) and less likely to report optimal Trust (45% vs. 55%, P=0.032). The Doctor Communication—Health Promotion domain was not significantly associated with EB.
Controlling for both clinical factors and sociodemographic factors did not significantly change these relationships (Table 3); patient reports of optimal Doctor Communication—Positive Behaviors (adjusted odds ratio, 0.46; 95% confidence interval, 0.39–0.54), and optimal Trust (adjusted odds ratio, 0.65; 95% confidence interval, 0.54–0.78) remained inversely associated with high EB. Tests for effect modification revealed no interaction effects with sex, race/ethnicity, or patient language.
In a 2-city study of low-income patients with diabetes receiving care in safety-net clinics, we found that patients who report better doctor communication behaviors and more trust in their physician report lower EB associated with having diabetes. In contrast, greater communication around health promotion is not associated with reports of EB.
Studies have shown that many patients with diabetes have depressive symptoms but are not clinically depressed; instead, they experience distress related to concerns about their diabetes and its management.1 Constant coping with diabetes management and fears of complications and reduced life expectancy can produce wear and tear on a patient’s psyche.20 This differs from major depressive disorder, which is a more global impairment of mental health. We found high rates of EB in our sample, even after excluding patients with significant depressive symptomatology. Our study results showed that patients with high EB were more likely to be Mexican/Mexican American and Spanish speaking. Prior literature shows that minority patients may be particularly susceptible to less culturally competent care.21–23 Spanish-speaking Latinos are often more dissatisfied with physician communication than English-speaking Latinos or whites.24 Diabetes patients with limited English proficiency also report poorer doctor-patient communication and may have worse outcomes when their physicians do not speak their language.25,26 Physicians should be aware of the high prevalence of EB among Spanish speakers and should take steps to detect and address concerns.17,27 Although no validated clinical screening questions on EB are available, asking patients what worries them about their diabetes would appear to be a reasonable first step. Eliciting patient concerns with open-ended questions is often particularly difficult in interpreted discussions.28,29
One domain of culturally competent care was not associated with reports of high EB. Doctor Communication—Health Promotion was low among both high and low EB groups and not associated with EB. We found no interactions between race/ethnicity and any of the 3 domains of culturally competent care, indicating that the doctor communication behavior and trust aspects of culturally competent care may be important to the experience of diabetes regardless of a patient’s demographic profile.
Our study has several limitations. We included only patients with ongoing continuity relationships with a primary provider. Patients reporting less culturally competent care may be less likely to stay in continuity relationships, and our findings may be an underestimate of the true association between aspects of cultural competence and EB in diabetes. Second, results may not be generalizable to other Latino groups as we only studied those who were identified as Mexican/Mexican American. Third, because of the study’s cross-sectional design, we were unable to establish a causal relationship between aspects of culturally competent care and EB. Patients experiencing less culturally competent care may report higher EB related to their diabetes, but they may also perceive their interactions with their physician as less positive as a result of high EB. However, we found that not all of the aspects of culturally competent care we examined were associated with EB, suggesting that emotionally burdened patients do not have a unilaterally negative or skewed view of the doctor-patient relationship. Instead, these patients appear to be able to discriminate between different aspects of care.
Our study also has several strengths. Most notably, we examined 3 important aspects of culturally competent care and found consistent associations. These associations need to be explored in greater depth in future studies. We also assessed these variables in a large, diverse, and highly vulnerable patient population, which is more susceptible to both negative doctor-patient interactions24,30 and EB.20 Third, we used a novel yet validated instrument to measure 3 important aspects of culturally competent care. Finally, we removed depressed patients from our study sample to better isolate patients suffering from EB from those with comorbid depression.
In sum, our results add to current understanding of the health care experience of ethnically diverse patients by finding that reports of 2-key aspects of culturally competent care, doctor communication behavior, and trust are inversely associated with high EB in diabetes. Further, studies should evaluate whether strategies that improve culturally competent care result in the alleviation of the EB associated with diabetes.
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