Article Text

Diabetes distress: understanding the hidden struggles of living with diabetes and exploring intervention strategies
  1. Emma Berry1,
  2. Sam Lockhart2,
  3. Mark Davies3,
  4. John R Lindsay4,
  5. Martin Dempster1
  1. 1School of Psychology, Queen's University Belfast, Belfast, UK
  2. 2School of Medicine, Dentistry and Biological Science, Queen's University Belfast, Belfast, UK
  3. 3Department of Clinical Psychology, Belfast City Hospital, Belfast, UK
  4. 4Department of Diabetes and Endocrinology, Mater Infirmorum Hospital, Belfast, UK
  1. Correspondence to Sam Lockhart, School of Medicine, Dentistry and Biological Science, Queen's University Belfast, Health Sciences Building, 97 Lisburn Road, Belfast BT9 7BL, UK; slockhart05{at}qub.ac.uk

Abstract

Diabetes distress is a rational emotional response to the threat of a life-changing illness. Distinct from depression, it is conceptually rooted in the demands of diabetes management and is a product of emotional adjustment. Diabetes distress has been found to be significantly associated with glycated haemoglobin (HbA1c) level and the likelihood of an individual adopting self-care behaviours. The lack of perceived support from family, friends and healthcare professionals significantly contributes to elevated diabetes distress, and this issue tends to be overlooked when designing interventions. Pioneering large-scale research, DAWN2, gives voices to the families of those with diabetes and reaffirms the need to consider psychosocial factors in routine diabetes care. Structured diabetes education programmes are the most widely used in helping individuals cope with diabetes, but they tend not to include the psychological or interpersonal aspects of diabetes management in their curricula. The need for health practitioners, irrespective of background, to demonstrate an understanding of diabetes distress and to actively engage in discussion with individuals struggling to cope with diabetes is emphasised.

  • EDUCATION & TRAINING (see Medical Education & Training)
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Introduction

Diabetes affects not only an individual's physical health, but can also have a profound impact on mental well-being. A diagnosis of diabetes imposes additional responsibilities, planning and self-monitoring. Such a marked re-adjustment of daily life can be physically and psychologically draining, and inevitably impacts on relationships.1 With the incidence of type 12 and type 23 diabetes increasing, exploring ways to improve self-care is essential. The recognition and understanding of emotional issues in diabetes care is a crucial step towards endorsing support that is not simply prescriptive, but is person-centred and collaborative. Developing a better understanding of interpersonal issues in diabetes management may help to inform the design of more effective interventions for individuals struggling to cope with diabetes.

When considering the emotional aspects of diabetes, attention to date has largely focused on the role of depression. Recent systematic reviews have shown depression to be 2–3 times more common in individuals with diabetes than in people who do not have diabetes.4 ,5 This knowledge spurred the Quality and Outcomes Framework to recommend that people with diabetes are screened for depression by asking two indicatory questions drawn from the Patient Health Questionnaire-2, although this requirement has now been dropped,6 primarily because concern was expressed that this approach resulted in a disproportionately high diagnosis of depression in people with diabetes.7 Fisher and colleagues have shown, in a large sample of people with type 2 diabetes, that 70% of those identified as having depression by the Centre of Epidemiological Studies Depression scale are not clinically depressed, as determined when using the gold standard clinical assessment: the Composite International Diagnostic Interview score.8 This suggests that a different, more specific, form of distress may be present in individuals who are exhibiting emotional difficulties. This disease-specific emotional distress has been termed ‘diabetes distress’.9 ,10

This review outlines our understanding of diabetes distress and aims to encourage health practitioners of all backgrounds to discuss emotional distress with their patients to achieve the explicit goal of improving diabetes management.

Defining diabetes distress

Diabetes distress has been defined across four broad themes: distress associated with the burden of self-care; interpersonal issues; emotional burden and worry; relationships with care-givers and healthcare professionals.11 When an individual receives a diagnosis of diabetes, they are faced with huge changes to daily life: they may experience worry and stress in their ability to manage the illness and may also feel at odds or frustrated with close family and friends. In a sample of adolescents with type 1 diabetes and their parents, diabetes distress was significantly related to glycated haemoglobin (HbA1c) level, self-care behaviours, and parents’ self-confidence in their adolescent's ability to cope with their diabetes.12 Diabetes distress may help to explain the connection between emotions, coping strategies and illness outcomes in diabetes.13

The emotional distress associated with being diagnosed with a long-term illness should not be perceived as a ‘condition’ in the same way that clinical depression may be. In an effort to elucidate the confusion between depression and diabetes distress, Fisher and colleagues have suggested that emotional distress should be understood as existing on a continuum, represented in terms of ‘magnitude’ (severity) and ‘content’ (nature of the distress).14 Content refers to the factors linked to feelings of distress—that is, diet control, strain on social relationships, feeling overwhelmed by the diabetes, etc. Severity relates to the extent to which an individual experiences these feelings of distress; it is also an indicator of whether a person is experiencing diabetes distress or whether they are exhibiting symptoms of depression.14 It is acknowledged that there may be a potential overlap between depressive symptoms and diabetes distress—for instance, having increased diabetes distress over time could be a precursor to depression, and, likewise, experiencing depressive symptoms may also elicit diabetes distress.15 Diabetes distress and depression can exist separately or co-occur, but the key point is that they are different and should be treated as such. It is important that physicians carefully consider the emotional difficulties presented by individuals with diabetes in order that they can provide the appropriate diagnosis. A misdiagnosis of depression can be stigmatising for the individual, and removes emphasis from the diabetes itself, which may indeed be at the root of their distress.8 By addressing the content and severity of the distress, one can begin to distinguish which an individual is likely to be experiencing and take the appropriate action.14

It should be acknowledged that some of the medical and behavioural problems commonly presented by people with diabetes may be related to an underlying emotional issue. Simply asking a person with diabetes how they are coping with their condition can open up a conversation about clinically important issues. A qualitative analysis by Balfe and colleagues has attempted to define causes of diabetes distress in young adults.16 It highlights the desire among patients for greater support from doctors and provides an excellent insight into the challenges facing patients with diabetes.

Formal measures of diabetes distress and clinical applications

Two scales are widely accepted as statistically sound measures of diabetes distress: the Problem Areas in Diabetes (PAID) scale17 ,18 and the Diabetes Distress Scale (DDS).11 The PAID scale was the first to offer a more comprehensive psychometric tool designed to identify the specific emotional difficulties experienced by individuals with diabetes. It is a 20-item questionnaire that uses a six-point scale to measure the response to common negative emotions and thoughts in relation to living with diabetes.17 PAID scale scores are associated with glycaemic control and self-care behaviour in type 1 and 2 diabetes,9 ,17 ,19 and can be used to track changes in diabetes distress over time.20 Five-item and single-item versions of the PAID scale have been developed as brief screening tools and are comparably valid and reliable to the full PAID scale.21 Despite its strengths, the PAID scale does not contain any questions addressing perceptions about health practitioners and the care received. In addition, it does not use subscales to distinguish the various elements of diabetes distress, and some of the questions included may be difficult for patients to interpret and understand.11 In response to these criticisms, the developers of the PAID scale developed the 17-item DDS-17.11 The tool was developed in collaboration with individuals with diabetes themselves to identify which questions from existing diabetes-related psychometric scales were the most appropriate, and to omit any questions deemed irrelevant or difficult to understand. The DDS-17 distinguishes four main subtypes from the principal term: physician-related distress—for example, ‘Feeling that my doctor does not give me clear enough directions on how to manage my diabetes’; emotional burden—for example, ‘Feeling angry, scared and/or depressed when I think about living with diabetes’; interpersonal distress—for example, ‘Feeling that friends or family don't appreciate how difficult living with diabetes can be’; distress related to the diabetes regimen—for example, ‘Feeling I am not testing my blood sugars frequently enough’.11 Note that the example items above tap into emotions or mood, but are also attached to specific aspects of diabetes coping and adjustment, and thus are contextually bound. The DDS-17 displays excellent internal consistency, indicating that the component questions are measuring a similar construct11; as for the PAID scale, there is also a brief version, the DDS-2.22

High scores—that is, scores above 40 on the PAID scale17 and above 3 on the DDS11—indicate increased diabetes distress, and have been found to correlate significantly with poorer lifestyle (diet control and exercise) and higher HbA1c.23 Diabetes distress, but not clinical depression, has been found to be significantly related to elevated HbA1c in individuals with type 21 ,24 ,25 and type 19 ,26 diabetes, which has been demonstrated across various populations and cultures.27–31 In simple terms, the higher the diabetes distress, the greater the impact on diabetes management. The diabetes MILES (Management and Impact for Long-term Empowerment and Success) investigation is currently underway, which will be comparing PAID and DDS-17 scales head-to-head in order to distinguish which is the more effective in assessing diabetes distress.32 Studies using translated versions of the DDS-1733–36 and the PAID scale37–39 have also been undertaken. The scales present a standardised way of measuring emotional distress, and items contained in the scales can provide physicians with a guide for talking about emotional problems in diabetes during routine appointments. The PAID scale (see online supplementary appendix 1) and the DDS-17 (see online supplementary appendix 2) are provided, should physicians wish to implement the tools in practice or simply to use them as a guide for discussions in emotional aspects of diabetes.

The wider impact of diabetes distress

Diabetes distress is common, affecting as many as 40% of people diagnosed with diabetes,40 and has been shown to increase over time in those with type 2 diabetes.22 The DAWN2 Study (Diabetes Attitudes, Wishes and Needs: second study) was the first to consider the indirect impact of a diagnosis of diabetes on a member of the family.41 Rates and experiences of diabetes distress among family members of people with diabetes was shown to vary, which implies cross-cultural variation, although this may be partially due to the use of different versions of the original scales to measure diabetes distress.41 Around one-third of family members reported experiencing a notable burden and negative impact of diabetes. Specifically, family members reported the negative impact of living with someone who has diabetes on their emotional well-being (45%), financial situation (35%), leisure activities (31%) and physical health (27%). In addition, they reported having high levels of distress (40%) and being worried about the risk of hypoglycaemic events occurring in the person with diabetes with whom they live (61%).41 Importantly, the project revealed that a substantial number of participants (39.4%) were not aware of how they could support their relative with diabetes and many wished to have more of a role in self-management. With evidence demonstrating the importance of interpersonal support in diabetes management,42 ,43 families, partners and carers should be considered more in strategies to improve self-care. DAWN2 offers a database of screening tools for diabetes distress research in families of people with diabetes, and provides important benchmarks for developing ways to better support individuals and their family members or partners. It is a progressive milestone in the literature and ratifies the importance of interpersonal factors and social context in diabetes care. The screening tools offered by DAWN2 are mainly for research purposes and are not integrated into clinical practice; however, they facilitate further exploration of interpersonal support in adolescent and ethnic minority groups, and the influence of gender, financial difficulties and geographical area in families’ ability to support their relative with diabetes.41

How people understand their diabetes and how much support they have are hugely influential in psychological adjustment.44 Conversely, too much or inappropriate supportive behaviour can also be a source of distress. For example, overprotectiveness in partners of individuals with diabetes has been found to influence coping and dietary non-compliance, when couples are partaking in low amounts of exercise.45 Self-efficacy has also been demonstrated to mediate the association between high levels of protectiveness in partners and self-reported diabetes distress.46

Psychological and educational interventions to improve HbA1c

Several interventions have been designed to address diabetes self-management, with the ultimate aim of improving HbA1c. These interventions differ in the extent to which they address psychosocial issues such as diabetes distress.

Structured diabetes education

Structured diabetes education programmes are recommended by the National Institute for Health and Care Excellence guidelines alongside routine diabetes treatment.47 They aim to provide individuals who have diabetes with the relevant information and skills to better understand and manage their illness. Programmes such as DAFNE (Dose Adjustment for Normal Eating),48 BERTIE (Bournemouth Type 1 Intensive Education),49 X-PERT50 and DESMOND (Diabetes Education and Self-Management for Ongoing and Newly Diagnosed)51 have been designed in a culture of quality assurance and evidence-based practice and are delivered by committed, highly trained practitioners. Outcome studies have shown that these programmes impact on multiple outcomes including quality of life and promotion of self-care behaviours;48–51 however, demonstrable improvements in HbA1c have proved to be elusive. This suggests that providing information and skills training is not sufficient to optimise glycaemic control in the long term.

More recently, the Irish DAFNE Study combined a motivational intervention and target setting with structured diabetes education and demonstrated a reduction in HbA1c and an increase in positive self-care behaviours at 12 months.52 Having used interviews, the authors were able to identify in more depth which aspects of the programme were most effective. These included focusing on self-confidence, worries about diet control and feeling helpless, underlining the importance of addressing emotional issues. A key issue with many, if not all, diabetes education programmes is the lack of emphasis on the relevant emotional struggles experienced by individuals and their families. Moreover access to formal psychological support for people with diabetes is scarce,5 although efforts have been made to increase the quality of support delivered in everyday health practices—for example, the Positive Diabetes course initiated by Dr Jen Nash (http://www.positivediabetes.com/). The course provides health professionals with training in delivering diabetes support that is unique to the individual, promoting a user-led approach to self-care plans, and encouraging the discussion of emotional difficulties in individuals who are struggling to cope.53

Interventions focusing on depression

While treatments for depression are shown to improve mood, there is little evidence to suggest that treating depression alone reduces HbA1c or any other variables clinically relevant to diabetes management.54 ,55 Outcome studies that focus on depression and diabetes distress do provide positive evidence of clinical improvement. A study using cognitive behavioural therapy for adherence and depression (CBT-AD) in type 2 diabetes,56 which was delivered by a dietician, a psychologist and a diabetes nurse, resulted in reduced depression scores and improvements in self-management behaviours. Impressively, 75% of participants had better blood glucose control after the intervention.56 However, this approach required a highly skilled multidisciplinary approach and would therefore be expensive to roll out across the NHS.

Interventions focusing on diabetes distress

A large-scale intervention study (the REDEEM Trial) was designed to address diabetes distress pragmatically and inexpensively.57 Participants with type 2 diabetes who had elevated diabetes distress (but no clinical depression) were randomly assigned to one of three computerised intervention programmes: computer-assisted self-management (CASM); CASM plus diabetes-distress-related problem solving (CAPS); or a computer-assisted programme that gave minimum support. It was found that diabetes distress decreased in all three study groups, suggesting that diabetes distress is highly responsive to intervention. These findings were also supported by the Monitoring of Individual Needs in Diabetes (MIND) studies, which demonstrated that monitoring diabetes distress can have a positive impact on levels of distress.58 ,59

An important finding of the REDEEM Trial was that those with high levels of diabetes distress required an intervention directly focusing on emotional distress to produce improvements in self-management behaviours.57 Despite these results, REDEEM did not reduce HbA1c. This highlights the need to address diabetes distress in a way that is more applicable to everyday life and suggests that computerised, population-directed interventions may not be helpful in improving HbA1c. REDEEM also excluded those unable or unwilling to use computers, implying the importance of looking at the intervention preferences of individuals with diabetes themselves.

It is clear from the evidence published to date that the interventions that are effective in both reducing diabetes distress and improving HbA1c are those that integrate psychological processes (emotions, thoughts and behaviours) with traditional education.60 An example of this is PRIMAS (Programme for Diabetes Education and Treatment for self-Determined Living with Type 1 Diabetes), which incorporated motivational interviewing techniques and expanded on an existing structured education programme: DTTP).61 PRIMAS augmented the usual education-based material with sessions on goal setting, self-motivation and diabetes distress and also sessions for families/partners. A significant reduction in HbA1c and diabetes distress resulted compared with the DTTP control group at 6 months follow-up. PRIMAS demonstrates that integrating cognitive, emotional and interpersonal factors into diabetes education is more effective in addressing the unseen struggles experienced by individuals with diabetes along with their families. Another pilot study compared the effectiveness of a programme incorporating coping skills training (following cognitive behavioural therapy techniques) and diabetes self-management training with a standard diabetes education and intervention programme.62 Results demonstrated an improvement in systolic blood pressure, cholesterol and HbA1c and a reduction in diabetes distress at 3 months, which held when retested at 12 and 24 months.

Informal ways to approach diabetes distress: the power of conversation

Physicians may feel they should prioritise somatic concerns over all other ‘non-medical’ issues, but disregarding emotional problems ignores the reality experienced by people who live with diabetes every day of their lives. It could be argued that discussion of emotional issues falls outside the domain of medical healthcare, and time restrictions are also cited as a major obstacle. However, it is clear that educational interventions are limited in efficacy if they fail to incorporate psychological processes and consider emotional burden. This bears relevance for clinical practice.

Moreover, Beverly and colleagues explored communication between people with diabetes and their doctor and the impact of engaging or not engaging in discussions relating to diabetes self-care.63 They found that individuals with diabetes who were less likely to discuss self-care issues (30% of entire sample) reported higher diabetes distress, poorer quality of life, less frequent self-management behaviours and less self-motivated coping strategies.63 This underpins the importance of prompting discussion during appointments to present people with an opportunity to talk about which aspects of diabetes care are the most difficult. This does not require psychological expertise and does not require providing solutions there and then; indeed, the MIND Study58 ,59 suggests that simply monitoring diabetes distress can have beneficial effects. It is simply about initiating normal conversation, listening to and showing an understanding and awareness of the psychosocial and emotional issues embedded in diabetes, which often go unnoticed and grow. As previously indicated, the four subdomains of diabetes distress provide a helpful framework to guide conversations with individuals struggling to manage their diabetes. Examples of potentially useful initial questions are: ‘how do you feel when you think about living with diabetes day-to-day?’; ‘do you think that the people around you understand what it is like for you to live with diabetes?’; ‘do you sometimes get annoyed with yourself because you don't manage your diabetes in the way that you would like, eg, you don't test your blood sugars as often as you would like?’

Self-empowerment is a huge part of coping; however, individuals struggling to cope should be made aware that adjustment to diabetes is a gradual process, with many peaks and troughs. Physicians should encourage people with diabetes to feel empowered by regaining a sense of ownership and control over their care plan, while also feeling suitably supported from external sources when need be.64 Practitioners should encourage patients to acknowledge their emotional difficulties and remind them that they are part of the process of adapting to living with diabetes. There are a number of excellent resources available that may help patients deal with the emotional distress they are experiencing. These are detailed in online supplementary appendix 3.

Future directions

Most research to date on diabetes distress has taken place in the USA. Few studies are based in the UK and Ireland, and there are huge differences in healthcare systems and other social and economic variables. Therefore, there is a need for evidence demonstrating the link between diabetes distress and clinical outcomes outside the USA and the financial implications of healthcare to the patient that exist there relative to healthcare systems such as in the UK.

Another concern about existing intervention trials is that the majority of participants recruited achieved subthreshold levels of diabetes distress and/or relatively low HbA1c levels, which limits the validity of results. It is important that intervention trials target people with diabetes who are experiencing elevated distress and high HbA1c levels at baseline to better assess the outcome of the programme delivered.

Many interventions have not taken into account what individuals themselves feel the programme should include or look like, and instead are based on using pre-existing methods, such as cognitive behavioural therapy or researcher preference, which are not specifically designed to address emotional problems specific to diabetes. Interventions do not always involve partners or carers in the programme, which is an integral part of adjustment and should therefore be an important focus for improving diabetes outcomes. Crucially, the design of a feasible and effective intervention that is integrative in its approach should be evidence-based, person-centred and informed by the people who are at the core of the intervention.

Main messages

  • Diabetes distress describes the illness-related distress experienced by people with diabetes.

  • High levels of diabetes distress are very common and are associated with poor glycaemic control.

  • Families of individuals with diabetes experience diabetes distress and play an integral role in diabetes self-management.

  • Health professionals can address emotional difficulties in diabetes care through basic conversation in their day-to-day practice.

Current research questions

  • Is diabetes distress a determinant of glycaemic control in those with poorly controlled diabetes?

  • How valid is the current construct of diabetes distress outside of the USA?

  • Can the perspective of patients be used to develop more effective, specific intervention strategies to reduce diabetes distress?

Key references

  • Fisher L, Skaff MM, Mullan JT, et al. Clinical depression versus distress among patients with type 2 diabetes: not just a question of semantics. Diabetes Care 2007;30:542–8.

  • Fisher L, Gonzalez JS, Polonsky WH. The confusing tale of depression and distress in patients with diabetes: a call for greater clarity and precision. Diabet Med 2014;31:764–72.

  • Jones A, Vallis M, Pouwer F. If it does not significantly change HbA1c levels why should we waste time on it? A plea for the prioritization of psychological well-being in people with diabetes. Diabet Med 2015;32:155–63.

  • Kovacs Burns K, Nicolucci A, Holt RIG, et al. Diabetes Attitudes, Wishes and Needs second study (DAWN2™): Cross-national benchmarking indicators for family members living with people with diabetes. Diabet Med 2013;30:778–88.

  • Nash J. Diabetes and wellbeing: managing the psychological and emotional challenges of diabetes types 1 and 2. Chichester, UK: Wiley Blackwell, 2013.

Self assessment questions

Please answer true or false to the below,

  • A score of 3 or above on the Diabetes Distress Scale (DDS-17) indicates elevated diabetes distress.

  • The prevalence of diabetes distress is demonstrated to be under 20% worldwide.

  • Diabetes distress scores are more significant predictors of HbA1c than depression scores.

  • The DAWN2 shows that family members of individuals with diabetes do not experience diabetes distress.

  • Talking about emotional difficulties in diabetes requires the expertise of a psychologist.

Answers

  • True

  • False. Research suggests the prevalence may be as much as 40% worldwide.

  • True

  • False. The DAWN2 investigation demonstrated that families can be hugely affected by the emotional difficulties involved in supporting a relative with diabetes.

  • False. Having a basic conversation with an individual who is struggling to cope with diabetes is something that all health professionals can initiate. Listening is the most important skill here as it will enable physicians to find out more about the context of these emotional difficulties, and from there provide the appropriate support.

References

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Supplementary materials

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Footnotes

  • EB and SL contributed equally and should be acknowledged as co-first author.

  • Contributors The final version of the article has been read by all authors, who have each made a significant contribution to the work, and have approved its submission to the Postgraduate Medical Journal. SL provided the premise for the article, undertook the literature review, and wrote the manuscript. EB undertook the literature review, wrote the manuscript, and led the revision process. MDa, JRL and MDe critically reviewed the manuscript and served as the experts guiding our recommended approach to diabetes distress.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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