Diabetes distress from the patient's perspective: Qualitative themes and treatment regimen differences among adults with type 2 diabetes

Abstract

Aims To explore diabetes distress in a sample of adults with type 2 diabetes, treated and not treated with insulin. Methods Six focus groups were conducted with 32 adults with type 2 diabetes, divided by treatment regimen (insulin-treated N=15; 67% female; 60% black; 46% Hispanic; M age 54; M HbA1c 73 mmol/mol (8.8%); non-insulin-treated N=17; 53% female; 65% black; 13% Hispanic; M age 58; M HbA1c 55 mmol/mol (7.2%)). A coding team transcribed and analyzed interviews to describe themes. Themes were then compared between groups and with existing diabetes distress measures. Results Participants in both groups described a range of sources of diabetes distress, including lack of support/understanding from others, difficulties communicating with providers, and distress from the burden of lifestyle changes. Insulin-treated participants described significant emotional distress related to the burden of their insulin regimen. They were more likely to report physical burden related to diabetes; to describe feeling depressed as a result of diabetes; and to express distress related to challenges with glycemic control. Non-insulin-treated participants were more likely to discuss the burden of comorbid medical illnesses. Conclusions Our data generate hypotheses for further study into the emotional burdens of diabetes for insulin-treated adults with type 2 diabetes, and are in line with quantitative research documenting increased diabetes-related distress among insulin-treated individuals. Data describe needs, currently unmet by most models of care, for comprehensive assessment and tailored management of diabetes-related distress.

What is diabetes distress and how can we measure it? A narrative review and conceptual model

“…Worry about the future and the threat of complications has also been shown consistently, across many studies, to be a frequently endorsed concern amongst people with diabetes (Delahanty et al, 2007;Kokoszka et al, 2009;Tanenbaum et al, 2016). Most of the measures, except the DSQoLs-R and IPQ-R sub-scales, elicit distress associated with concern about complications and/or the future, albeit only the PAID additionally captures distress associated with existing complications.…”

“…self-care, problem-solving, interpersonal relationships), each of which may be associated with a certain amount of emotional distress that can vary over time within and between individuals/sub-groups of people with diabetes. For example, sources and severity of distress can differ between those with type 1 and type 2 diabetes, and those managing type 2 diabetes with different treatment regimens (Baek, Tanenbaum, & Gonzalez, 2014;Tanenbaum, Kane, Kenowitz, & Gonzalez, 2016). These definitions offer insights into the conceptualization of DD and hence inform its operationalization.…”

“…The TI-DDS, and the W-BQ 28 and DSQoLs-R sub-scales, capture treatment burden-related distress and the DSQoLs-R sub-scale has a narrow focus specifically on this. Indeed, treatment-regimen distress is frequently endorsed as a serious problem by diabetes research participants, especially those using insulin (Delahanty et al, 2007;Fisher, Polonsky, et al, 2014;Tanenbaum et al, 2016), and research has shown that it may have the largest and most uniform effect upon diabetes outcomes relative to other aspects of DD, especially in type 1 diabetes (Polonsky et al, 2005;Strandberg et al, 2014). Developed specifically for people with type 1 diabetes, it is unsurprising that the T1-DDS and the DSQoLs-R sub-scale focus on these aspects of DD.…”

“…Emotional distress surrounding food and eating also ranks high amongst concerns for people with diabetes (Delahanty et al, 2007;Kokoszka et al, 2009;Tanenbaum et al, 2016). The PAID, DDS, T1-DDS and DSQoLs-R sub-scale offer variable coverage of this, with the PAID and T1-DDS being most inclusive, whilst the W-BQ28 omits this.…”

“…The T1-DDS, and to a lesser extent the PAID, uniquely elicit distress associated with hypoglycemia, despite the fact that fear of hypoglycemia is well recognized as a distressing aspect of diabetes (Delahanty et al, 2007;Kokoszka et al, 2009;Tanenbaum et al, 2016) and has been demonstrated to have a major impact on diabetes outcomes (Wild et al, 2007). Early measures may offer limited coverage of this element of DD because they were not developed specifically for insulin-treated diabetes and the use of insulin as a treatment option for type 2 diabetes has emerged in more recent years.…”