Key Messages
- •Diabetes distress is a normal aspect of living with diabetes and can fluctuate over time.
- •Adolescence and young adulthood can be challenging life periods, and this age group may require extra support.
- •The management of distress needs to be acknowledged and addressed within the mainstream of person-centred, comprehensive youth diabetes care.
Diabetes Distress in Adolescents and Young Adults Living With Type 1 Diabetes
The self-management of type 1 diabetes (T1D) represents an additional challenge to the usual developmental tasks of adolescence and young adulthood. In our current work, D1 Now (
1
), we are developing and piloting an intervention to improve outcomes in young adults (18 to 25 years) living with T1D in Ireland. Part of this work involves screening young adults for diabetes distress with the Diabetes Distress Scale (2
), and this has led to conversations with clinical diabetes staff around recognizing, managing and supporting young people with elevated levels of diabetes distress. The aim of this paper is to provide an overview on the prevalence and sources of diabetes distress in adolescents and young adults and to discuss the issues around screening and managing distress in the diabetes clinic.What Exactly Is Diabetes Distress?
Diabetes distress (hereafter referred to as distress) can be conceptualized as the negative emotional burden of living with diabetes (
3
). Much of the research on the emotional side of diabetes to date has focused on depression. However, although rates of depression are higher in individuals with diabetes than the general population (4
), it is increasingly clear that distress is a distinct emotional construct rooted in the worries, fears and concerns of individuals contending with a chronic condition (5
). It is not a psychiatric disorder, although, if left untreated, its persistent and pervasive nature can result in more generalized negative affect (6
). Traditionally seen as a complication of diabetes, Gonzalez and colleagues postulated that distress is more appropriately viewed as the emotional aspect of living with this demanding condition (7
). The same authors suggested that distress exists on a single continuous dimension that is characterized by content and severity (5
). The content can be made up of distress in relation to diabetes and self-management (e.g. fear of hypos) but also distress related to other life stressors (e.g. family, finances) and distress from other causes (e.g. life history, genetics). It is important not to lose sight of the nondiabetes-related causes of distress because these can often impact on self-management and diabetes-related difficulties. The severity of distress can fluctuate throughout the lifespan (5
).It is estimated that about one-third of adults with T1D are living with elevated levels of distress at any one time (
8
). This one-third figure is also reflected in the rates of distress seen in adolescents living with T1D (9
). Although no meta-analytic work has been done on the rates of distress within the young adult population, 2 studies have estimated the prevalence to be 28% and 32%, respectively (10
,11
). Higher levels of distress are significantly associated with poorer self-management behaviours, such as less physical activity, poorer diet and insulin restriction (12
). Higher levels of distress have also been consistently shown to be associated with poorer clinic outcomes, in particular, glycemic control (12
,13
). It can also be a contributing factor to recurrent diabetic ketoacidosis, which tends to be most commonly seen in young women (see Garrett and colleagues for a recent review of the recurrent diabetic ketoacidosis literature) (14
).What Is Contributing to Diabetes Distress in Adolescents and Young Adults?
Most distress research to date has been done with people living with type 2 diabetes (
12
), who can have very different experiences and challenges to people living with T1D. However, some work has been done to investigate what exactly are the contributing factors to distress in adults living with T1D. Fisher and colleagues used an exploratory factor analysis to identify 7 sources of distress for people living with T1D (15
). These included a sense of powerlessness, negative social perceptions, physician-caused distress, relationships, fear of hypoglycemia, self-management and eating distress. These sources of distress form the subscales of one the first distress scales for adults with T1D, the Diabetes Distress Scale---Type 1 (DDS-T1) (15
).Looking more specifically at younger people living with T1D, Balfe and colleagues conducted qualitative interviews with 35 young adults (aged 23 to 30 years) living with T1D in Ireland (
16
). They reported that distress is most commonly triggered by self-consciousness, fear of being mistaken as having type 2 diabetes, day-to-day management struggles, difficulties with the health-care system, concerns about complications and the future and apprehension about pregnancy. The young adults felt that talking to diabetes health-care professionals about distress reduced its impact and should be a part of standard care. There has been little qualitative research done with adolescents with T1D about their experiences of distress.It is worth noting that distress levels are often found to be higher in females than males (
10
,12
,15
); however, it is unclear whether that is due to a true increased rate or a reflection of different coping strategies (e.g. females are more likely to talk about and seek support for distress) that could underlie gender-specific differences (10
).Interventions for Diabetes Distress
As high levels of distress can be quite a debilitating burden for adolescents and young adults and as it is also likely to impact on other outcomes, such as self-management and glycemic control, several interventions have been developed for its reduction. A recent systematic review and meta-analysis of interventions targeting distress among adults with T1D included 41 randomized, controlled trials and concluded that there is sufficient evidence to support the use of psychoeducational interventions to reduce distress (
8
). That review showed that psychoeducation focusing on diabetes and mood or targeting motivation, delivered in any format, was significantly associated with reduced distress at follow up.There is less evidence around interventions for distress specifically targeting adolescents or young adults. A recent systematic review of interventions targeting distress among adolescents identified only 4 randomized, controlled trials, precluding meta-analysis (
9
). In a narrative synthesis of intervention effectiveness, the authors concluded that there is some evidence that psychoeducational interventions, including cognitive restructuring, goal-setting and problem-solving, can reduce distress. It seems that interventions that have been developed based on theory and have a well-defined rationale for why they work are more likely to be effective (17
). That review highlighted that, although interventions appear to show some promise for reducing distress in the short term, there is limited evidence about how to sustain these benefits in the longer term, or what may be needed for ongoing support for young people to reduce and prevent further distress (9
). Preliminary findings from a study published since the publication of that review indicate that intervening with a psychoeducational intervention may be effective in preventing the development of distress in adolescents (18
). The review also highlighted that the few intervention studies conducted so far have been carried out largely in the United States, with relatively socioeconomically advantaged populations. Interventions are needed to target young people from more socioeconomically and ethnically diverse backgrounds.How Do We Screen for Distress?
Several tools have been developed to measure distress. Two that are widely used to assess distress are the Problem Areas in Diabetes scale (PAID) and the Diabetes Distress Scale (DDS) (
2
,3
). The PAID is a 20-item scale of diabetes-specific emotional distress that measures a wide range of feelings related to living with diabetes and its treatment, including guilt, anger, depressed mood, worry and fear. It is scored from 0 to 100, with higher scores indicating greater distress. A score of >40 is considered the threshold for elevated distress among adults (19
). In more recent years, the PAID has been adapted for adolescents (age 11 to 19 years old) with T1D. The PAID-Teen scale has 26 items that are rated on a 6-point scale (20
). It includes reference to unique developmental stressors, such as parents and friends. It is scored from 26 to 156 with a score >70 indicating moderate distress and a score >90 indicating high distress (21
). The PAID has not been adapted for young adults. The DDS is a 17-item scale that captures 4 dimensions of distress: emotional burden, regimen distress, interpersonal distress and physician distress (2
). It yields a total distress score as well as the 4 subscale scores. A mean item score of ≥3 on either the total score or any of the subscale scores is considered the cutoff for distress worthy of clinical attention (2
). Although the DDS has not been adapted for any specific age group, it has been adapted for T1D specifically. The DDS-T1 has 28 items rated on a 6-point scale (15
). It has 7 T1D-specific subscales, which have been mentioned previously. The DDS-T1 uses the same scoring system and cutoff points as the DDS. Both the PAID and the DDS are available in short form.Both versions of the PAID and the DDS report good psychometric properties and have been translated into various languages for widespread use. Although both scales measure the same construct, it has been noted that they bear significant differences (
22
,23
). A comparison study conducted in Germany found that the PAID has a stronger focus on emotional concerns, diet and complications, which are closely associated with quality of life and depressive outcomes, whereas the DDS is more reflective of self-management and physician-related distress, which may explain its consistent associations with self-care and glycemic control outcomes (23
). In summary, both scales have good psychometric properties and a justified decision should be made on which to use based on the clinical/scientific purpose (23
).Supporting Adolescents and Young Adults in the Diabetes Clinic
Regularly screening for distress using these scales can provide a pathway to acknowledge and deal with distress in the clinic, and its importance has been recognized in international guidelines (
24
,25
). However, the value of labelling and measuring distress is controversial. Fears exist that using scales may “overpathologize” the emotional side of living with diabetes. Some health-care professionals fear that by labelling distress and providing a “number” for it, we are opening a “Pandora’s Box,” which may be difficult to close (7
). Sturt and colleagues acknowledged that, unless local psychological care services and care pathways for distress exist, health-care professionals may be reluctant to uncover distress (12
). Diabetes health-care professionals have identified barriers to addressing psychosocial concerns with patients, which include lack of time, privacy and knowledge (26
). In addition, internationally >50% of diabetes teams would like to receive more training in this area (27
). It cannot be denied, however, that distress is a common component of the experience of diabetes and support cannot wait until the appropriate care pathways and training are in place. Gonzalez and colleagues (7
) argued that validated measures do not need to be used and that ongoing clinical conversations and support within the clinic that include discussions about the emotional aspects of living with diabetes may be of the most benefit. They posited that, as the “emotional” and “physical” aspects of living with T1D are inextricably linked, the management of distress should happen within the diabetes service. As highlighted in the Balfe et al study, young people living with diabetes feel that talking to their health-care professionals reduces the impact of distress and were keen to see it as part of standard care (16
). This is in line with the American Diabetes Association’s recommendation that the aim of diabetes care is to “optimize health outcomes and health related quality of life” (25
).In practice, adolescents and young adults who have high levels of distress can be supported by diabetes health services that: 1) promote positive communication that invites discussion about emotional aspects of living with diabetes and 2) provide practical supports and psychoeducation for self-management of diabetes. Positive communication involves use of empathetic listening, reflective comments and considerate enquiry. The language used around diabetes is important; it should be collaborative, inclusive and person centred, such as that proposed by the UK National Health Service “Language Matters” report (
28
). Normalizing the existence of distress can reassure young people and can be therapeutic (National Health Service England
Language matters: Language and diabetes.
Language matters: Language and diabetes.
https://www.england.nhs.uk/wp-content/uploads/2018/06/language-matters.pdf
Date accessed: November 10, 2019
7
). It also recognizes the experience of distress as one that occurs on a continuum and that may fluctuate over time (5
). If the young person is experiencing severe distress, a referral to psychological services may be required. Second, the particular aspect of diabetes that the young person is finding distressing can be addressed through provision of practical supports within the clinic, such as through referral to structured education courses and provision of access to technologies that can improve self-management (e.g. continuous glucose monitors or insulin pumps) (16
). This approach of positive communication and provision of practical supports for self-management allows relationships to build between the young person and staff within the diabetes clinic. This power of connection, fostered through the relationships young people can build with their diabetes care team cannot be underestimated (29
). It can often transcend the “expertise” and skill set that many on the diabetes team have identified as fearing they lack when discussing issues of distress. The ability to actively listen, to validate, to reassure and support, are all vital skills for good diabetes care.Future Directions
As there has been relatively little research on distress in adolescents and young adults living with T1D, there are several key questions that need to be addressed. First, we need more prevalence estimates of elevated distress in these groups to collate an international picture. We also need qualitative explorations of the drivers of distress because it is likely that this age group may experience some unique challenges. As mentioned previously, there is some evidence to suggest that psychoeducational programs may reduce distress (
8
,9
). However, as pointed out by Skinner and colleagues, we do not know how feasible it is for busy diabetes clinicians to deliver these programs fully and effectively (6
). Digital technologies are a possible solution here and work is warranted on the acceptability and feasibility of technology-delivered psychoeducational programs (6
). However, dealing with distress in routine clinical care is still crucial and its perceived barriers need to be explored from the perspectives of all stakeholders. A central goal going forward should be to understand how we can upskill and support diabetes clinicians so that addressing distress becomes a standard component of routine care for adolescents and young adults with T1D.Acknowledgments
This work was funded by a Health Research Board Definitive Intervention and Feasibility Award (Ref: HRB DIFA-2017-034 ). The funding body had no role in the design or writing of this report.
Author Disclosures
Conflicts of interest: None.
Author Contributions
M.B. and E.M. conceived this work; B.C., M.L. and S.F.D. made substantial contributions to its design; E.M. drafted the manuscript, and it was critically revised by M.B., B.C., M.L. and S.F.D. All authors provided final approval of the published version and all authors have agreed to be accountable for all aspects of this work.
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Article Info
Publication History
Published online: March 14, 2020
Accepted:
March 5,
2020
Received:
November 15,
2019
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© 2020 The Authors. Published by Elsevier Inc. on behalf of Canadian Diabetes Association.
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