Understanding the sources of diabetes distress in adults with type 1 diabetes
Introduction
The successful management of diabetes requires ongoing attention to a complex and demanding set of self-care tasks. Many individuals with diabetes report frustration with the burdens of disease management and they experience worries, fears, and concerns about the potential emergence of complications, erratic blood glucose numbers, hypoglycemic episodes, and feelings of “diabetes burnout” (Polonsky, 1999). 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 (Delahanty et al., 2007, Fisher et al., 2013, Hessler et al., 2014, Lloyd et al., 2005, Ogbera and Adeyemi-Doro, 2011).
To date, most studies have examined DD among adults with type 2 diabetes (T2D) (Dunn et al., 1986, Herschbach et al., 1997, Polonsky et al., 1995). These studies have led to the identification of common sources of diabetes-related distress in this population and the development and validation of measures that can be used in research and clinical care to identify both the level and key sources of distress during clinical visits (Polonsky et al., 2005). Clinical research on DD with T2D adults, however, has not been matched by similar studies with T1D adults, who present with very different disease-related challenges and experiences. For example, a recent qualitative study reported that DD was common among T1D patients and identified several sources likely to be unique to T1D, including a sense of self-consciousness about T1D, concern about being misidentified as having T2D, day-to-day management distress, healthcare system struggles, fears about complications and the future, and concerns about pregnancy (Balfe et al., 2013). Unfortunately, many measures of DD developed for use with T2D adults do not include commonly expressed concerns of T1D patients, e.g., pronounced fear of hypoglycemia, feelings of powerlessness, a sense of burnout due to the pervasive and unremitting disease management demands. Last, among T1D adults there has been as yet no systematic exploration of the relationship of DD to a variety of patient disease-related and demographic characteristics. Such information can be helpful in identifying T1D populations at particular risk for DD so that preventative interventions can take place.
To address these gaps, the goals of this study were to: identify the unique content, sources and prevalence of DD among adults with T1D; document the relative levels of severity of different sources of DD; determine how patient demographic and disease-related characteristics are associated with DD to help identify T1D patients at risk; and to apply these findings to clinical care by developing a reliable and valid assessment device that can be used to assess DD in adult T1D patients.
Section snippets
Methods
To systematically identify the primary sources of DD 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. Similar interviews were conducted with 10 diabetes health care providers (MDs, CDEs, dietitians). Interviewees were asked: “What about T1D drives you crazy?” and “What particular aspects of diabetes are the most difficult for
Results
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%) (Table 1). The Canadian sample, in contrast to the U.S. sample, reported a significantly longer duration of diabetes, had less academic education, a greater frequency of married individuals, higher HbA1C and BMI, and more long-term complications. These
Discussion
This study identified seven sources of DD among adults with T1D that are significantly related to a variety of patient demographic and disease-related characteristics. The findings are replicated in a very different, independent adult T1D sample, thus enhancing the generalizability of the results.
The seven major sources of DD among T1D adults include the following. Powerlessness points to a sense of helplessness that individuals feel when trying to exercise control over a condition that often
Acknowledgements
This research was funded by NIH Grant DK094863. Portions of this study were presented as an abstract at the American Diabetes Association meetings, San Francisco, California, June 2014. Appreciation is expressed to the following for their assistance with patient recruitment: Anna Chang, M.D., Paul FitzGerald, M.D., Martha Nolte Kennedy, M.D., Grace S. Kim, M.D., Sara Kim, M.D., Pooja Sherchan, M.D., Peter M Sklarin, M.D., Amber Wheeler, M.D., Douglas W. Zlock, M.D.
References (24)
- et al.
Patient age: A neglected factor when considering disease management in adults with type 2 diabetes
Patient Education and Counseling
(2011) - et al.
What's distressing about having type 1 diabetes? A qualitative study of young adults' perspectives
BMC Endocrine Disorders
(2013) Coefficient alpha and the internal structure of tests
Psychometrika
(1951)- et al.
Association of diabetes-related emotional distress with diabetes treatment in primary care patients with type 2 diabetes
Diabetic Medicine
(2007) - et al.
Measurement of emotional adjustment in diabetic patients: Validity and reliability of the ATT39
Diabetes Care
(1986) - et al.
The relationship between diabetes distress and clinical depression among patients with type 2 diabetes
Diabetes Care
(2010) - et al.
The confusing tale of depression and distress in patients with diabetes a call for greater precision and clarity
Diabetic Medicine
(2014) - et al.
REDEEM: A practical trial to reduce diabetes distress
Diabetes Care
(2013) - et al.
AASAP: A program to increase recruitment and retention in clinical trials
Patient Education and Counseling
(2011) - et al.
When is diabetes distress clinically meaningful? Estabishing cut points for the Diabetes Distress Scale
Diabetes Care
(2012)
Psychometric properties of the Hypoglycemia Fear Survey-II for adults with type 1 diabetes mellitus
Diabetes Care
Psychometric and screening propoerties of the WHO-5 well-being index in adult outpatients with type 1 or type 2 diabetes mellitus
Diabetic Medicine
Cited by (249)
Testing 3 Digital Health Platforms to Improve Mental Health Outcomes in Adults With Type 1 Diabetes: A Pilot Trial
2024, Canadian Journal of DiabetesBringing an end to diabetes stigma and discrimination: an international consensus statement on evidence and recommendations
2024, The Lancet Diabetes and EndocrinologyEvaluation of a novel eating disorder prevention program for young women with type 1 diabetes: A preliminary randomized trial
2023, Diabetes Research and Clinical PracticeGlucose variability and mood in people with type 1 diabetes using ecological momentary assessment
2023, Journal of Psychosomatic Research
Conflicts of interest: Lawrence Fisher: Consultant to Roche Diagnostics, Elli Lilly. Ian Blumer: Consultant to or advisory board with to Animas, Bayer, BD Diabetes, BMS/AZ, Elli Lilly, Janssen, Medtronic, Merck, Novo Nordisk, Roche, Sanofi. William Polonsky: Consultant or advisory board with Sanofi, Novo Nordisk, Elli Lilly, Dexcom, Abbott, J&J, Boehringer Ingelheim, Takeda, Roche. Anne Peters: Consultant or advisory board with Amgen, Abbott Diabetes Care, Becton Dickinson, Biodel, Bristol Myers Squibb/Astra-Zeneca, Janssen, Lexicon, Lilly, Medtronic Minimed, Novo Nordisk, OptumRx, sanofi, Takeda, Thermalin. Speakers bureau = Bristol Myers Squibb/Astra-Zeneca, Novo Nordisk, Janssen.