Understanding the sources of diabetes distress in adults with type 1 diabetes

The strongest mean distress was in Powerlessness and Eating Distress, while Physician Distress and Friends/Family Distress were lowest, and the pattern replicated in Canada.

“For example, feelings of Powerlessness and Eating Distress had the highest mean levels; Management Distress, Hypoglycemia Distress and Negative Social Perceptions had midrange mean levels; and Physician Distress and Friends/Family Distress had the lowest mean levels (Table 3). These findings were fully replicated in the Canadian sample.”

The U.S. exploratory sample included 305 completed surveys out of 348 eligible individuals, and the Canadian confirmatory sample included 109 completed surveys out of 117 eligible individuals.

“Of 348 eligible U.S. individuals (the exploratory sample), 305 completed the online survey (87.0%). Expressions of interest were received from 117 eligible Canadian individuals (the confirmatory sample) and 109 completed the survey (93.2%)”

Powerlessness was more strongly linked than other subscales to depressive symptoms, quality of life, and hypoglycemia worry, whereas Management Distress was more strongly associated with HbA1C.

“PHQ8, WHO5 and HFS-W were more strongly linked to Powerlessness than any of the other subscales, as would be expected; similarly, HbA1C was more strongly associated with Management Distress than any of the other subscales.”

Higher diabetes distress was reported by women, participants with complications, those with poor glycemic control, younger participants, people without a partner, and non-White patients.

“Higher DD was reported for women, those with complications, poor glycemic control, younger age, without a partner, and non-White patients.”

The prevalence of diabetes distress is high and is related to glycemic control and several demographic and disease-related characteristics, supporting the need to address distress in clinical care.

“The prevalence of DD is high and is related to glycemic control and several patient demographic and disease-related patient characteristics, arguing for a need to address DD in clinical care.”

The study identified seven major sources of diabetes distress in adults with type 1 diabetes using a newly developed assessment instrument.

“We identified a profile of seven major sources of DD among T1D using a newly developed assessment instrument.”

The seven subscales were Powerlessness, Negative Social Perceptions, Physician Distress, Friend/Family Distress, Hypoglycemia Distress, Management Distress, and Eating Distress.

“The final subscales that reflected different sources of DD (Table 2), with many reflecting areas that are unique to T1D patients, were: Powerlessness”

The exploratory factor analysis in the U.S. sample yielded seven coherent, reliable sources of distress that were replicated by confirmatory factor analysis in the Canadian sample.

“An EFA with 305 U.S. participants yielded 7 coherent, reliable sources of distress that were replicated by a CFA with 109 Canadian participants: Powerlessness, Negative Social Perceptions, Physician Distress, Friend/Family Distress, Hypoglycemia Distress, Management Distress, Eating Distress.”

Higher BMI was associated with greater Eating Distress, no partner with greater Hypoglycemia Distress, and non-White status with greater Hypoglycemia Distress.

“those with higher BMI (≥ 25) reported significantly higher Eating Distress than those with lower BMI (t = 3.05, p = .002), those with no partner reported significantly higher Hypoglycemia Distress than those with a partner (t = 2.09, p < .03), and non-White participants reported higher Hypoglycemia Distress than White participants (t = 2.11, p < .03).”

The prevalence of diabetes distress was high, with 41.6% of participants reporting at least moderate distress.

“Prevalence of DD was high with 41.6% reporting at least moderate DD.”

The T1-DDS total scale was significantly associated with depressive symptoms, lower quality of life, more complications, and higher HbA1C.

“For example, the T1-DDS total scale was significantly associated with PHQ8 (r = .63, p<.001), WHO5 (r = −.46, p<.001), number of complications (r = .22, p<.01), and HbA1C (r = .17, p<.01).”

Women, younger participants, and those with more complications reported higher distress on the total scale and all seven subscales.

“women reported significantly higher distress on the total and all 7 T1-DDS subscales than men (total T1-DDS t = 3.65, p < .001), younger participants (median split < 41 years) reported significantly higher DD on the scale total and all 7 subscales than older participants (t = 4.38, p < .001), and those with more complications reported more distress on the scale total and all 7 subscales than those with fewer complications (t = 3.98, p < .001).”

The scale showed good internal consistency and excellent 9-month test-retest reliability.

“Alpha coefficients indicated good total scale reliability (total scale = .91, sub scale range .76 to .88), and 9-month test-retest reliability was excellent (total scale r = .74)”

• cites Nunnaly, 1978Not matched

  Couldn’t be matched to a paper in Crossref, so it can’t be checked.

The final solution was a 7-factor, 28-item structure after removing poorly performing items.

“Consequently, the 7-factor, 28-item solution was accepted.”

The study aimed to identify the unique sources of diabetes distress for adults with type 1 diabetes.

“To identify the unique sources of diabetes distress (DD) for adults with type 1 diabetes (T1D).”

Diabetes distress is distinct from clinical depression and is directly linked to poor glycemic control and problematic self-care behaviors.

“Taken together, the emotional and behavioral challenges generated by diabetes and its management have been labeled “diabetes distress” (DD), which has been found to be distinct from clinical depression and, unlike depression, has been directly linked to poor glycemic control and problematic self-care behaviors”

• cites Delahanty et al., 2007 sourceNot checked yet

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• cites Fisher et al., 2013 sourceNot checked yet

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• cites D. H. Hessler et al., 2014 sourceNot checked yet

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The response scale for the survey items ranged from 1, not a problem, to 6, a very serious problem.

“A 6-point response scale was used to rate each item: 1 = ”not a problem” to 6 = “a very serious problem”.”

Construct validity of the new scale was assessed against depressive symptoms, complications, HbA1C, BMI, and hypoglycemia worry.

“Construct validity was assessed by correlations with depressive symptoms (PHQ8), complications, HbA1C, BMI, and hypoglycemia worry scale (HWS).”

The survey included measures of age, gender, ethnicity, education, partner status, age at diagnosis, HbA1C, BMI, insulin delivery method, CGM use, and diabetes complications.

“Demographic measures included age, gender, ethnicity (White/non-White), education (years), living with a partner, and age at diagnosis. Diabetes status included the latest clinic-recorded HbA1C within six months, body mass index (BMI; self-reported weight and height), current form of insulin delivery (pump vs. multiple daily injections), current use of real-time continuous glucose monitor (CGM), and number of diabetes complications from a list of 8.”

The interview questions asked what about type 1 diabetes drives participants crazy and what aspects of diabetes were most difficult.

“Interviewees were asked: “What about T1D drives you crazy?” and “What particular aspects of diabetes are the most difficult for you?””

The authors developed sources of diabetes distress from qualitative interviews with adults with type 1 diabetes and diabetes health care providers, then tested survey items in two patient samples using exploratory and confirmatory factor analyses.

“Sources of DD were developed from qualitative interviews with 25 T1D adults and 10 diabetes health care providers. Survey items were then developed and analyzed using both exploratory (EFA) and confirmatory CFA) analyses on two patient samples.”

Internal consistency was evaluated with Cronbach's alpha and 9-month test-retest reliability with Pearson correlation.

“Internal consistency of subscales was determined by Cronbach’s alpha (Cronbach, 1951) and 9-month test-retest reliability was determined by Pearson correlation.”

• cites Cronbach, 1951 sourceNot checked yet

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The T1-Diabetes Distress Scale was validated using the PHQ-8, WHO-5, and the hypoglycemia fear questionnaire worry subscale.

“Three scales were included to assess the construct validity of the survey, called the T1-Diabetes Distress Scale (T1-DDS). The Patient Health Questionnaire-8 (PHQ-8)”

• cites Kroenke, Spitzer, & Williams, 2001Not matched

  Couldn’t be matched to a paper in Crossref, so it can’t be checked.

The authors conducted exploratory factor analyses in the U.S. sample and confirmatory factor analyses in both U.S. and Canadian samples.

“Following completion of the qualitative interview that yielded 59 survey items, exploratory principal components factor analyses (EFA) using both orthogonal (Varimax) and oblique (Promax) rotations were specified with the U.S. data and conducted with SPSS software (PASW Statistics, v. 19). Once a final factor solution was accepted with the U.S. data, a confirmatory factor analysis (CFA) was undertaken with both the U.S. and Canadian samples, using Mplus software (v. 6.11)”

• cites Muthen & Muthen, 2012Not matched

  Couldn’t be matched to a paper in Crossref, so it can’t be checked.

The authors used a literature review and structured interviews with adults with type 1 diabetes and diabetes health care providers to identify the primary sources of distress and convert them into survey items.

“To systematically identify the primary sources of DD common among adults with T1D, we used a literature review to reveal common themes plus a one-hour, qualitative, structured interview conducted with 25 adults with T1D (age ≥19), stratified by age, gender, and years with T1D.”