MANY of the estimated 1.2 million Australian adults with type 2 diabetes mellitus experience psychological distress as they adjust to life with a chronic illness. Symptoms of distress, such as anxiety or low mood, negatively affect psychosocial functioning and diabetes self-management. Current general practice management guidelines for type 2 diabetes recommend regular mental health screening.

However, interpreting common mental health questionnaires such as the K10 can be challenging in the context of type 2 diabetes. Questionnaire items that measure depressive symptoms including lethargy or appetite disturbance may also be tapping into common features of type 2 diabetes. Indeed, recent studies show that many people with type 2 diabetes who screen positive for depression on questionnaires do not meet the criteria for major depressive disorder in a structured psychiatric assessment.

Research suggests that some patients with type 2 diabetes who report elevated depressive symptoms are instead experiencing diabetes distress – a pattern of psychological distress that reflects adjustment to a new diabetes diagnosis. Diabetes distress is more common than depression in some groups (rates up to 46%), can become chronic and is more strongly associated with glycaemic health and diabetes self-management than depression (here, and here).

Screening for diabetes distress may help GPs and other clinicians identify patients who are experiencing a common psychological response to managing a chronic and complex illness, rather than a psychiatric disorder such as major depressive disorder.

Current data indicate that diabetes distress comes from four key sources:

  • cognitive distress, such as thoughts of long term health complications;
  • interpersonal distress, such as feeling unsupported by loved ones;
  • regimen distress, such as difficulty keeping up with a new diet; and
  • distress arising from interactions with health care professionals.

By understanding the sources of a patient’s diabetes distress, clinicians may be better informed when selecting care pathways.

Regimen distress appears to be especially relevant to disease management. Patients experiencing regimen distress are more likely to experience difficulties with blood glucose management and may benefit most from interventions targeting daily disease management.

On the other hand, interpersonal distress seems more closely linked to depressive illness. Patients with high levels of interpersonal distress many be at risk of greater functional impairments and may require more substantial mental health support (here, and here).

In light of the increasing evidence of the link between diabetes distress and adverse health outcomes, GP guidelines now recommend assessing the emotional and mental health of people living with diabetes on diagnosis and annually thereafter. In addition, times of increased stress, whether directly related to diabetes, such as transitioning to insulin or developing a complication, or general life stresses, such as bereavement or loss of employment, warrant further appraisal of emotional wellbeing.

GPs may also notice signs suggestive of a change in a person’s emotional state such as non-attendance to scheduled appointments, taking medication less reliably, decreased engagement with self-care strategies, or appearing frustrated or disinterested during consultations. It can be daunting for GPs to integrate emotional health assessments within their usual diabetes care given the constraints of short appointment times and limited local mental health resources. However, using a structured approach, GPs can efficiently and effectively oversee the mental wellbeing of their patients with diabetes:

Normalise the asking – it’s helpful for patients to know that assessing and supporting their emotional wellbeing is integral to their diabetes care. Letting them know that you will be regularly checking on their mental health creates permission to share any concerns as they arise.

Normalise the distress – preface the assessment with statements such as “many people living with diabetes find the daily demands of diabetes really challenging and stressful. I’m wondering what it’s like for you?”

Clarify the source of distress – identify the particular aspect of living with diabetes causing the person the most hardship. Useful questions can include:

  • What is the most difficult part of living with diabetes for you?
  • What is troubling you the most about your diabetes?
  • What are you finding hard right now?
  • What else is going on in your life that is making it harder lately?

Asking “what is going well right now?” is also important as it is common for people to overlook their strengths and not acknowledge the gains they are making.

Diabetes distress can also be quickly assessed using a freely available questionnaire. The Diabetes Distress Scale (DDS) is a 17-item measure of diabetes-related emotional distress. The DDS yields an overall score (calculated as the average across all items) and four subscale scores for cognitive, interpersonal, regimen and physician-related distress (calculated as the average across all subscale items). A score of ³ 3 in a subscale indicates clinically severe distress in that subscale.

Distinguish distress from depression – diabetes distress is a common, understandable response to living with a chronic medical condition that requires constant attention. It differs from depression in that it relates quite specifically to the demands of living with diabetes, ranging from experiencing stigma, struggling with diet, testing and medication regimens or concerns about long term complications. Depression is characterised by a more pervasive sense of failure and hopelessness across the full range of life domains and a more generalised loss of enjoyment and motivation.

There is, however, a degree of overlap between the two, with more prolonged or severe diabetes distress predisposing to depression, as well as, at times, comprising one aspect of the symptomatology of a depressive episode. When a patient with diabetes reports lethargy and appetite disturbance, check to see if this is accompanied by lapses in self-care, sleep disturbance, lack of interest in once pleasurable activities, and/or feelings of worthlessness.

Collaborative management – whereas managing major depression may require completion of a mental health care plan and referral to psychological services, diabetes distress, particularly regimen distress, can often be managed by the person’s usual diabetes health professional – most often their GP. This avoids further fragmentation of care and the burden of accruing further diagnostic “labels”, with GPs well placed to build on an existing therapeutic relationship to attune diabetes management with both physical and psychological outcomes in mind.

Structured problem solving is a useful, accessible tool for managing diabetes distress.

Working with the person to pinpoint the problem to solve, generating and weighing up a range of possible solutions and then planning and reviewing a chosen course of action, helps restore a sense of hope and agency.

Provide resources – written and online resources are an effective way of providing further information and support for people with diabetes distress.

The National Diabetes Services Scheme (NDSS) provides fact sheets on diabetes distress, the NDSS Helpline, as well as diabetes peer support and group education.

Many patients with diabetes experience emotional distress. While this may appear similar to depression, it may simply reflect a patient’s emotional adjustment to diabetes. Distress about a new or complex diabetes regimen can have a substantial impact on diabetes management. Screening for diabetes distress can help personalise treatment by understanding the sources of a patient’s emotional distress. Guidance and support from a GP or other clinician can have a positive impact on both the physical and emotional health of people experiencing diabetes distress.

Dr Peter Baldwin is a Research Fellow and Psychologist at the Black Dog Institute, where he leads a large randomised controlled trial examining e-mental health for people with type 2 diabetes. He is on Twitter @peter_a_baldwin.

Dr Vered Gordon is a GP with a special interest in mental health and is the GP Education Developer at the Black Dog Institute.


The statements or opinions expressed in this article reflect the views of the authors and do not represent the official policy of the AMA, the MJA or InSight+ unless so stated.

3 thoughts on “Helping your patient with diabetes distress

  1. Anonymous says:

    To my knowledge no one has formally validated either of the two widely used diabetes distress scales (DDS or PAID) with Aboriginal Australians. Therr are a couple of papers showing very high rates of depression amongst Aboriginal Australians with diabetes so I would start there. The adapted version of PHQ9, adapted by Alex Brown, would be a good tool to start with.

  2. Anonymous says:

    Thanks for highlighting the relationship between diabetic distress, depression and chronic disease. Is use of the Diabetes distress scale validated for Aboriginal and Torres Strait Islanders? In remote Australia, Aboriginal people have a huge diabetic burden, with diabetes affecting some 15 % of people in the town I work in, T2DM being diagnosed in teenagers ( including thin ones) and GDM is commonplace.

  3. Dr Robert Peers MBBS [Melb.] says:

    No doubt, diabetic distress will mainly affect an ALREADY stressed person–and “stress”, friends, is our old friend ANXIETY DISORDER, easy to detect by asking about childhood shyness and lifelong worrying.

    My research in the 1990s at first suggested that the direct cause of T2D was simply a fatty diet [Himsworth H. The diet of diabetics prior to the onset of the disease. CLIN SCI 1936–and later studies in Colorado and Holland]. Such a diet alters cell membrane make-up, inhibiting the insulin receptor.

    By about 1995, I realised that CALM folk getting T2D this way were likely to develop MILD, and easily controlled disease, often in their later years, with no particular reason to be distressed–especially with almost no risk of complications, like heart disease and stroke.

    In contrast, look at the T2D cases emerging from high-fat [placenta-inflaming] GESTATIONS–with anxiety a constant component, that easily turns to depression with personal fatty diet [it inflames the already stressed brain]. Anxiety causes insulin resistance, via cortisol excess and sympathetic activation, which also drive the cardiovascular complications [i.e. the whole PsychoCardioMetabolic Syndrome] just not seen in CALM fat-eating folks.

    Oxford T2D researchers long ago noted two types of T2D–a strangely benign form and [perhaps the majority] one with all the nasty complications. Prof Alicia Jenkins–now in Sydney–made a similar observation at an NHMRC-Nat Univ of Singapore symposium some years ago. I call them The Oxford Variations.

    Data suggest that over half–probably more–of all type 2 diabetics have either anxiety or depression, either of which will surely predispose to the above distress. Primary prevention is simple–calm folks avoid fatty diet, and pregnant women do the same. Simple.

    As for treatment, calm cases may actually enjoy a lasting cure, if they eat Conn and Newburgh’s grain-rich diet, which cured 20 or so diabetics in Michigan [JAMA, 1939!!]. The same grains provide the anti-anxiety agent myo-inositol [about 1.5 gm/day], which [in a higher dose of 5 gm/day, from cheap supplement] will reliably abolish anxiety-induced insulin resistance–plus a direct insulin-sensitising action. Numerous studies with myo-inositol in PCOS women show–as expected–profound and rapid reversal of all components of the Metabolic Syndrome [with CVD and psychiatric benefits not looked for].

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