DEFINING DIABETES DISTRESS

Defining Diabetes Distress ‎13 ‎September ‎2023 (behavioural, cognitive and emotional) SUMMARY ----------------------------------------------------- Very little research has been undertaken asking people with diabetes themselves what they think might help them to manage the emotional burden of living with diabetes. ------------------------------------------------------ A small-scale qualitative study undertaken with young adults with Type 1 diabetes in Ireland asked participants this question and found that what young people wanted was more diabetes education, more peer support groups and, crucially, more opportunity to talk to healthcare professionals about living with diabetes8. -------------------------------------------------- The young adults who took part in this study identified diabetes healthcare professionals as the people they wanted to talk to. This was because they recognised that diabetes healthcare professionals are in a better position to understand the challenges of living with diabetes, than those who work in services without diabetes experience. It seems reasonable to suggest that, because everyone who lives with diabetes is impacted emotionally. --------------------------------------------- REFERENCES 1 Nicolucci A, Kovacs Burns K, Holt RI et al (2013). Diabetes Attitudes, Wishes and Needs second study (DAWN2TM): cross-national benchmarking of diabetes-related psychosocial outcomes for people with diabetes. Diabetic Medicine 30 (7), 767–677 ------------------------------------------- Defining Diabetes Distress ‎13 ‎September ‎2023 (behavioural, cognitive and emotional) Very little research has been undertaken asking people with diabetes themselves what they think might help them to manage the emotional burden of living with diabetes. A small-scale qualitative study undertaken with young adults with Type 1 diabetes in Ireland asked participants this question and found that what young people wanted was more diabetes education, more peer support groups and, crucially, more opportunity to talk to healthcare professionals about living with diabetes8. The young adults who took part in this study identified diabetes healthcare professionals as the people they wanted to talk to. This was because they recognised that diabetes healthcare professionals are in a better position to understand the challenges of living with diabetes, than those who work in services without diabetes experience. It seems reasonable to suggest that, because everyone who lives with diabetes is impacted emotionally, ⦁ interview had been conducted3,4. The question arises, therefore, if these people are not depressed, then what accounts for their psychological distress? ⦁ Fisher and colleagues have proposed that these people were reporting genuine psychological distress, but that this distress was centred on living with diabetes. ⦁ They coined the term ‘diabetes distress’, which has been described as ‘the unique, often hidden emotional burdens and worries that are part of the spectrum of patient experience when managing a severe, demanding, chronic disease like diabetes’5 ⦁ Nevertheless, the amount of money spent on psychological research is still very small in comparison with the amount of money spent on biomedical research. ‎ (behavioural, cognitive and emotional) ⦁ Because people with the condition are themselves in control of the management of Type 1 and Type 2 diabetes, their degree of adjustment (behavioural, cognitive and emotional) is the primary predictor of clinical outcome. ⦁ Outcome measures, such as HbA1c are traditionally used to determine whether somebody has made the adjustments required. High HbA1c suggests that a person has not adapted to living with diabetes, whereas low HbA1c is taken as a sign that somebody has made the necessary adjustments. ⦁ Using HbA1c as a measure of adjustment is not without merit. Much effort and expense is devoted to collecting, collating and auditing HbA1c, blood pressure, cholesterol and so on. ⦁ However, the majority of diabetes services in the UK do not routinely undertake psychological measurement of adjustment. ⦁ A small number of large-scale international studies (such as the Diabetes Attitudes Wishes and Needs study) have found that around 40% of people with diabetes, both Type 1 and Type 2, report measurable levels of poor psychological wellbeing1. ⦁ (behavioural, cognitive and emotional) "It seems reasonable to suggest that, because everyone who lives with diabetes is impacted emotionally, then emotional care should fall within the clinical bailiwick of every healthcare professional who works in diabetes services" So, also broadly appreciate that – to a greater or lesser degree – a diagnosis of, and living with, diabetes requires an emotional adjustment on the part of the person diagnosed. However, it seems that far fewer of us are comfortable having emotional conversations with the people we care for. Until approximately 10 years ago, the diagnostic label most frequently given to people with diabetes who reported psychological distress was depression. More recently, the assumption that everybody who presents with psychological distress should be considered to be suffering from – and should be treated for – depression has been questioned2 . In a series of studies, Fisher and colleagues undertook diagnostic interviews with people with both Type 1 and Type 2 diabetes who had self-reported clinically significant scores on depression questionnaires. It was found that up to 70% of those who scored highly on depression questionnaires did not meet diagnostic criteria for depression after a diagnostic peoples’ distress is not pathological, but simply reflects the Sisyphean burden, interpersonal tensions and fears inherent in diabetes self-management. In addition, it should be acknowledged that people with diabetes report that their relationships with healthcare professionals, and with healthcare systems, are a significant source of the distress they experience. At this point, it should be clearly stated that a significant proportion of people with both Type 1 and Type 2 diabetes do experience diagnosable mental health issues, such as depression, anxiety, eating disorder and personality disorder, but these issues are not the focus of this article. Nevertheless, it is worth remembering that significant psychological ill health, whether pathological or otherwise, is more likely to be found in people with diabetes, and psychological distress has a negative impact on diabetes self-care leading to poorer biomedical outcomes and increased complications. =============================================== Need for emotional care There has been a significant focus on the clinical significance of diabetes distress in the research literature in the last 10 years, and there is increasing evidence to support the notion that reducing diabetes distress improves HbA1c7 Measuring diabetes distress The 17-item Diabetes Distress Scale6 is a psychometrically validated assessment of diabetes distress. Reading through the 17 items that make up the Diabetes Distress Scale (see over), it is clear that around 40% of people with diabetes, both Type 1 and Type 2, report measurable levels of poor psychological wellbeing ============================================== REFERENCES 1 Nicolucci A, Kovacs Burns K, Holt RI et al (2013). Diabetes Attitudes, Wishes and Needs second study (DAWN2TM): cross-national benchmarking of diabetes-related psychosocial outcomes for people with diabetes. Diabetic Medicine 30 (7), 767–677 -------------------------------- 2 Fisher L, Gonzalez JS and Polonsky WH (2014). The confusing tale of depression and distress in patients with diabetes: A call for greater clarity and precision. Diabetic Medicine 31 (7), 764–772 ----------------------------------- 3 Fisher L, Skaff MM, Mullan JT et al (2007). Clinical depression versus distress among patients with type 2 diabetes: Not just a question of semantics. Diabetes Care 30 (3), 542–548 ---------------------------------- 4 Fisher L, Hessler DM, Polonsky WH et al (2016). Prevalence of depression in type 1 diabetes and the problem of over-diagnosis. Diabetic Medicine 33 (11), 1590–1597 ------------------------------------ 5 Gonzales JS, Fisher L and Polonsky WH (2011): Depression in diabetes: have we been missing something important? Diabetes Care 34(1), 236–239 --------------------------------------------- 6 Polonsky WH, Fisher L, Earles J et al (2005). Assessing psychosocial distress in diabetes: Development of the Diabetes Distress Scale. Diabetes Care 28(3), 626–351 -------------------------------------------- 7 Sturt J, Dennick K, Hessler D et al (2015). Effective interventions for reducing diabetes distress: ---------------------------------------------------- Defining Diabetes Distress (behavioural, cognitive and emotional)