Endocrine system diseases
Diabetes: mental health considerations in adults
Pharmacists can contribute to the psychological and emotional wellbeing of people living with diabetes by helping to identify those who have mental wellbeing needs, optimising treatment and minimising risk factors.
People living with diabetes are at risk of several psychological conditions; 40% of people living with diabetes struggle with their mental wellbeing. There is often a bidirectional relationship between the psychological condition and diabetes. In addition, the COVID-19 crisis has been a difficult and anxious time for many people with diabetes: regular care has been disrupted and data has suggested a higher risk of mortality.
There are numerous considerations for people living with diabetes (e.g. managing multi-comorbidity, managing multiple daily injections and monitoring blood glucose). Balancing the many aspects of care in what can be a constantly changing environment can negatively impact on a person’s psychological wellbeing,. If support for emotional wellbeing is not built into healthcare systems, it is inevitable that some people with diabetes will struggle to self-care.
Less than 25% of people with diabetes receive emotional and psychological treatment from the NHS and, in 2017, 33% of people who called the Diabetes UK helpline were looking for psychological support. Economically, it is practical to build better support for psychological and emotional wellbeing for people with diabetes. As an example, the cost of treating someone with type 2 diabetes mellitus (T2DM) with concurrent poor mental health can increase by up to 50%,.
NHS England’s ‘Five year forward view’ has identified the importance of an integrated mental and physical health approach and the All-Party Parliamentary Group for Diabetes has noted severe deficits in many systems of care supporting those living with diabetes,. Box 1 details the institutions where integrated care has been achieved,.
Box 1: Integrated care in the UK
The following institutions have achieved integrations between mental and physical health:
- King’s College London includes the ‘Three dimensions of care for diabetes’ (a provision for psychological support for people living with diabetes). This integrates a psychiatrist and a community worker into the diabetes team. It has shown improvements in blood glucose, reductions in A&E visits and hospital admissions in response to integrations.
- Tower Hamlets in London has embedded a diabetes clinical psychologist into the specialist diabetes service working into GP networks and type 1 pathways. It is currently working on upskilling primary care staff.
- NHS Grampian in Scotland has embedded clinical psychologists specifically to focus on emotional distress and self-management outcomes. It is aiming to complete a service redesign to initiate innovative approaches to care delivery.
Practitioners in generalised psychology/psychiatry services in the UK are thought to have insufficient experience of diabetes to provide appropriate support and there is a great need for more joined-up services. Specialist services are stretched owing to the growing population of people living with diabetes, and this has led to many people waiting for up to a year for necessary treatment.
As diabetes self-management is complex, a multifaceted approach to care is required to optimise treatment and offset any risks. This article will provide practice points for pharmacists on how to help people living with diabetes manage their psychological wellbeing.
Screening and referral in the pharmacy setting
It is every healthcare professional’s responsibility to help empower people to manage their own care. For pharmacists, this could form part of a routine medication review or when counselling people on a change to their medicine. Pharmacists are in a unique position to identify people with psychological and emotional needs, seeing people with higher frequency than most other healthcare professionals. Each contact with someone provides the opportunity to ask them about their emotional wellbeing and, if appropriate, assess them using a validated screening tool.
In some clinical settings, the use of validated screening tools, such as the ‘Insulin Treatment Appraisal Scale’ (ITAS) to assess psychological insulin resistance, may be useful. Additionally, the ‘Diabetes UK Mood Information Prescription’ may serve as a pragmatic tool for conversations between people and healthcare professionals.
It is important to understand that people may not be expecting to be asked about their mental wellbeing during routine consultations and, therefore, this needs to be approached considerately. People with diabetes may feel more comfortable discussing psychological pressures with their diabetes healthcare professional or GP, rather than a mental health specialist, as only one in five people living with diabetes were found to have used support or counselling from a trained professional to help them manage their diabetes. In a community pharmacy setting, the person’s GP is likely to be the most appropriate person to refer to. It is important to explain the reason for any referrals, to ask the person how they feel about the suggestion, and to discuss what they want to gain from the referral to ensure that the consultation is as effective as possible.
Make a plan together for the next steps, including treatment options, and ensure that even when you have referred someone on to other professionals, you continue to remain as an option in their care. If your role allows, consider referral to a psychiatrist, psychologist, Improving Access to Psychological Therapies services, community mental health teams or to structured education.
During every consultation with a person with diabetes you should consider them holistically. Pharmacists should use open questions, such as “How do you feel about your new treatment?”; “What are your challenges in managing your conditions?”; “What are your thoughts about the future management of your condition?”. If an area of emotional support is flagged, then it is appropriate to either refer the person for further assessment or use a validated tool to help understand what support they require. For example:
- Psychological barriers to insulin using the ITAS;
- Depression using the Patient Health Questionnaire-9;
- Eating disorder using the mSCOFF questionnaire;
- Anxiety using the General Anxiety Disorder-7;
- Problem Areas in Diabetes scale;
- Fear of hypoglycaemia using the Hypoglycaemia Fear Survey-version II Worry Scale,,,,,,.
If no flagged area for emotional support is identified, always consider that circumstances can change and that at future consultations this holistic approach will be beneficial. However, if a person is referred for further support, you should remain available as a point of contact.
The language used by healthcare professionals may be verbal, written and non-verbal (e.g. body language) and, when used well, can help people feel included in their care (see Box 2). It helps place value on what is important to the person with the condition and can lower anxiety and build confidence to better self-care.
When language is used poorly, people can feel stigmatised and it may be detrimental in achieving effective self-care, leading ultimately to worse clinical outcomes. Feelings of shame, guilt and resentment can lead to disengagement from people managing their condition proactively.
Box 2: Good practice for interactions
It is important that there is consistent practice behaviour for the interaction between healthcare professionals and people living with diabetes. There is a need to be considerate of the language used during discussions, for example:
- Use language (including tone and non-verbal gestures) that is free from judgement or negative connotations (i.e. avoid the threat of long-term consequences or criticism);
- Try to be person-centred in your approach (e.g. use ‘person with diabetes’ rather than ‘diabetic’);
- During consultations, aim to be collaborative and engaging;
- Avoid language that attributes responsibility or blame to the person for the development of their diabetes or its consequences (e.g. avoid using the term ‘control’);
- Aim to ask about how diabetes is affecting their life in general — for example, discuss their perspective of blood glucose (e.g. “How do you find managing your blood glucose?”)
- Avoid language that infers generalisations (e.g. terms such as ‘compliant/non-compliant’), stereotypes, prejudice, or links one individual with previous experience of others of a similar background or in a similar situation.
It is important to develop an empathetic language style that seeks to ascertain an individual’s point of view of their condition, rather than making assumptions. People often feel judged when it comes to eating habits, therefore, it is better to explore with the person why they eat the way they do and allow them to give their point of view (e.g. “Tell me about your experience of when you choose to eat something less healthy than other available options’’).
Listen for the person’s own words or phrases about their diabetes and explore or acknowledge the meanings behind them. For example, someone stating “I hate diabetes” may be a sign of diabetes distress, therefore, reassure them by using phrases such as “diabetes is not just medical — how you feel about it is important too”.
Start open questions with an acknowledgement of the daily pressures associated with managing diabetes. For example, “Many people find living with diabetes difficult at times”. This normalises the emotional challenges of living with diabetes. It is important to feel comfortable in your approach to exploring emotional wellbeing; approach will differ according to person. Some examples of open questions include:
- “What aspect of living with diabetes do you find most challenging?”;
- “How does diabetes get in the way of other things in your life?”;
- “What concerns you most about your diabetes?”.
Remain mindful that emotional wellbeing in relation to diabetes fluctuates over time. Any change in circumstances or the emergence of new stressors may contribute to this, and the absence of signs or symptoms at one consultation should not prevent exploration at future consultations.
Mental healthcare planning
There are a range of mental health conditions that are prominent in people with diabetes. It is important to consider these and incorporate their management into a holistic care plan.
This is common and often those who have diabetes will experience depression for longer periods and have more frequent episodes than people who do not have diabetes. Depression is a serious mental health condition characterised by an absence of positive feeling (e.g. loss of interest and enjoyment) and overt low mood. A range of emotional, cognitive, physical and behavioural symptoms can occur (e.g. weight loss/gain, insomnia, lack of concentration, feelings of worthlessness and guilt).
There is good evidence to support a bidirectional relationship between diabetes and depression,. People with depression are more likely to develop T2DM, and people with diabetes are two to three times more likely to be affected by symptoms of depression. The cause of this relationship is not fully understood and seems to be owing to a collection of biological, environmental, psychological, social and behavioural factors. Personal circumstances and family history may play a role, in addition to diabetes-specific factors, such as having a chronic and progressive condition with complex management.
Depression and depressive symptoms are associated with poor health outcomes including suboptimal self-management, earlier onset of complications, increased risk of diabetes distress/anxiety, impaired quality of life and premature mortality,.,.
It is important to differentiate depression from diabetes distress — for example, 10% of people have diabetes distress only relating to how they feel about diabetes specifically; 13% of people have diabetes distress and depression; and 12% have depression only relating more generally to how they feel about life. Furthermore, 65% of people will have no diabetes distress or depressive symptoms; however, those that have one symptom immediately gain a risk factor for the other,. In practice, this means that both need to be assessed to inform any intervention needed.
Treatment for depression that is moderate to severe is usually most effective when a combination of psychological and pharmacological interventions are used. Cognitive behavioural therapy (CBT) is the most effective psychological intervention and it has been found that selective serotonin reuptake inhibitors (SSRIs) are the most effective pharmacotherapy for those with moderate–severe depression and diabetes. Pharmacotherapy has potential for causing undesired side effects in those with diabetes (e.g. weight gain, metabolic abnormalities), therefore it is encouraged to incorporate non-pharmacological interventions to aid treatment. It is possible that combining diabetes structured education with psychotherapy may be effective at reducing depressive symptoms and have a positive effect on diabetes control (i.e. normalising HbA1c levels).
It is important to be alert to people who are struggling to self-motivate, are having frequent appointments or are missing their appointments. Try to ask about depressive symptoms at routine appointments, at high-risk times (e.g. post-bereavement), and periods when management of diabetes may be more challenging (e.g. post-hospitalisation, following changes to treatment).
To identify depression, pharmacists should look out for the following in people with diabetes:
- Low mood (e.g. feelings of hopelessness);
- Loss of interest/pleasure;
- Heightened irritability (e.g. persistent feelings of anger);
- Poor concentration;
- Psychomotor changes (e.g. agitation);
- Social withdrawal;
- Suicidal thoughts;
- Substance abuse;
- Sleep disturbance;
- Weight or appetite changes.
Although there are tools available to diagnose depression, the questionnaires can lead to false positives when underlying causes of symptoms are not elucidated for people living with diabetes (e.g. multiple hypoglycaemic episodes in a night may lead to fatigue, a symptom of depression). Being mindful of these limitations allows for these tools to be used appropriately and for people to get the help they need (e.g. if people demonstrate suicidal thoughts or thoughts of self-harm, urgent support is required).
This group of psychological conditions are characterised by persistent and excessive anxiety and worry,. Diabetes has been associated with increased anxiety and anxiety disorders, however, the prevalence is not higher than that expected overall in the general population. It is possible that different types of anxiety are more prevalent in those living with diabetes and further research is taking place to elucidate links.
It is important to differentiate between a hypoglycaemic episode and symptoms of anxiety. Tachycardia, confusion, tremor, dizziness, headaches and feeling nauseous are symptoms of both hypoglycaemia and panic attacks.
SSRIs should be considered as the first-line pharmacological treatment for anxiety disorders. CBT is effective in most anxiety disorders; if the person is suffering from avoidance behaviour, then exposure therapy is usually combined. Unlike for depression, the evidence is weak in support of combining pharmacological and psychological treatments unless the person has panic disorder,. Risks and benefits of pharmacotherapy in those with diabetes need to be considered carefully, with input from the person living with diabetes.
This refers to an emotional state of feelings of stress and guilt arising from living with diabetes and the relentless burden of self-management. Diabetes distress may be considered distinct from major depressive disorders; it is an expected reaction to the burden of diabetes management. It is estimated that diabetes distress may affect as many as one in four people with type 1 diabetes mellitus (T1DM) and one in five people with T2DM.
The core stressors may vary according to the type of diabetes; T1DM distress is more commonly related to insulin therapy and blood glucose levels, whereas T2DM distress may centre more around obesity and food restrictions. The presence of diabetes-related emotional distress may have a significant impact on long-term outcomes and has been shown to be associated with prolonged suboptimal glycaemic control. Unaddressed, this may progress to diabetes burnout — a state of physical or emotional exhaustion resulting from prolonged diabetes distress. Those with diabetes burnout may feel unable to control their diabetes and consequently disengage from required self-care tasks (e.g. skipping insulin doses or not monitoring blood glucose). Healthcare professionals can help by:
- Ensuring early identification of signs of diabetes distress;
- Using every contact with the person as a potential opportunity to explore concerns;
- Establishing a dialogue around emotional wellbeing after diagnosis;
- Supporting people in identifying their priorities for future appointments.
Identify the signs of diabetes distress, which include:
- Suboptimal glycaemic control;
- Disengagement with self-care;
- Failure to attend appointments;
- Impaired relationships with healthcare providers;
- Ineffective coping strategies for managing stress (e.g. diabetes burnout).
Explaining what diabetes distress is and reassuring the patient that many people with diabetes experience it is important. If self-blaming ideas are exhibited, the person should be reassured that diabetes management is a journey and not a reflection on the person. Any steps towards end goals are to be celebrated.
Psychological insulin resistance
People with T2DM often have negative feelings about insulin. This may occur when starting insulin, on continued use or when insulin treatment is changed. People may be concerned about the medicine itself (e.g. its effectiveness and dependence), the injections (e.g. pain, bruising), the skills needed (e.g. coping with a complex regimen), self-perceptions (e.g. failure, social stigma), or disease progression,,,,.
Psychological insulin resistance may lead to people not using insulin correctly or stopping therapy,. This can lead to clinical inertia (i.e. a failure to be able to intensify treatment when it is appropriate to do so), which in turn can result in the development of long-term complications.
It is highly likely that people with diabetes have many factors playing into their concerns over insulin therapy. The complexity of the treatment regimen may have a big impact on the person’s ability to accept further therapy.
Physical and mental impairments (e.g. visual deficits, dexterity) may need consideration. For those needing help with insulin administration, consideration should be given to the insulin regimen and the person’s feelings around third-party administration. This adds a level of dependency for care that may have been previously absent. High costs of insulin may lead to local formulary choices being twice-daily neutral protamine Hagedorn (i.e. intermediate-acting) insulins, which require more than once-daily administration — adding to the treatment burden.
To try to prevent psychological insulin resistance, pharmacists should:
- Consider a glucagon-like peptide 1 mimetic as alternative injectable therapy;
- Have conversations about insulin after diagnosis, particularly if there are concerns about insulin resistance developing;
- Ensure people understand the progressive nature of diabetes and recognise that they may require insulin therapy in the future;
- Avoid using insulin as a threat and never discuss insulin as an option left owing to treatment ‘failure’ with oral therapies.
It is important to look out for:
- People avoiding discussions about intensification of insulin treatment as they may be visibly upset at the suggestion;
- People already on insulin appearing to be uninterested in managing their diabetes. They may talk about discontinuing insulin or not administer insulin as directed;
- Concerns about injecting or side effects (e.g. weight gain);
- People negotiating to stay on their current regimen and aiming to work harder to achieve targets — avoiding appointments may follow.
Reassure the person that insulin resistance is not a punishment for ‘failed’ management and that most people need insulin at some point; aim to highlight the benefits of insulin treatment. Using an ‘insulin trial’ with an option to revert if needed may be considered.
If the problem is ongoing or the person has underlying anxiety, needle phobia or other mental health problems, refer them to a mental health professional. In addition, the person could benefit from sharing their experiences with a peer group.
Fear of hypoglycaemia
This fear, of hypoglycaemia (i.e. lower than expected blood sugar), is an extreme fear of the risk and/or occurrence of hypoglycaemia. It is normal and rational to be alert to hypoglycaemia to avoid risks; however, concerns can escalate into an excessive fear, which may impact on a person’s quality of life, their family members and the management of diabetes. Fears associated with hypoglycaemia involve:
- Losing consciousness;
- Embarrassing situations;
- Having no one to help;
- Not having hypoglycaemic treatment available;
- Night-time episodes;
- Needing assistance.
It is known that people with T1DM are more likely to have this fear if they have experienced a severe hypoglycaemic episode or have lost hypoglycaemia awareness,,. In T2DM, the fear is greater in those who are treated with insulin compared with those treated with sulfonylureas, and the fear of hypoglycaemia can be a psychological barrier to insulin initiation.
To help prevent fear of hypoglycaemia, it is necessary to ensure people understand what hypoglycaemia is, its symptoms (e.g. sweating, feeling shaky, dizziness, palpitations) and how to appropriately treat it. In addition, acknowledge that there may be overlap of warning symptoms (e.g. tremors).
It is important to identify and ask about compensatory behaviours with medicines (e.g. persistently running sugars high by decreasing doses of insulin, which can result in long-term health consequences) and lifestyle (e.g. reduced exercise). It may be beneficial to explore their experiences of hypoglycaemic episodes (e.g. severity, time and place) and their perception of access to health services. This may help identify specific triggers and factors that may contribute to hypoglycaemic episodes.
It is important to reassure the person that it is common to be concerned about hypoglycaemia and explain that:
- Not everyone with diabetes will experience severe hypoglycaemia;
- Even the most severe episodes can be prevented by self-management techniques and immediate treatment.
Pharmacists should focus on enhancing knowledge and skills in hypoglycaemia management, placing emphasis on timely treatment. Consider getting the person to complete a hypo diary — a journal to help track hypoglycaemia and triggers — and involve family members in discussions,.
It has been established that people with diabetes are more likely to engage in disordered eating behaviours, such as binge eating and compensatory weight control. A number of factors may contribute to the increasing prevalence of disordered eating behaviours, such as emphasis on dietary management and psychological distress,. However, unique to people with diabetes is the omission or restriction of insulin dosing. ‘Diabulimia’ refers to the process by which people with T1DM deliberately give themselves less insulin than they need or stop taking it altogether for the purpose of weight loss. This process induces hyperglycaemia and loss of glucose in the urine, thus resulting in weight loss.
Identifying disordered eating behaviours can be particularly challenging; it may be difficult to distinguish from required self-care behaviours (e.g. calorie counting and avoidance of certain foods). Disordered eating typically develops early in life and, therefore, screening can be considered appropriate from adolescence.
In people with T1DM, eating disorders are associated with earlier onset of microvascular complications, increased frequency of diabetic ketoacidosis (DKA) and hospital admissions, and increased mortality.
You should reassure the persons that this is a commonly experienced pressure and help them establish a healthy relationship with eating and exercise. For example, outline the signs of overly restrictive beliefs about diet. However, there is a need to be sensitive when highlighting the risk of long-term complications associated with insulin omission as it can cause further distress.
Be aware of the signs, such as frequent and restrictive dieting; core beliefs around acceptability of different food groups; preoccupation with body size or weight; rapid unexplained weight changes; missed clinic appointments; sub-optimal outcomes (e.g. acute changes in HbA1c, erratic fluctuations in blood glucose levels) and self-management (e.g. infrequent body/mass monitoring and frequent changes to insulin regimen); and associated personality traits (e.g. obsessiveness).
If suspected, explain that a clinical assessment, through a referral, will need to be completed. People should be advised that support is available and of the importance of early intervention. A hospital referral is required for those identified as being at immediate risk and includes people with recurrent DKAs, cardiac arrhythmias, electrolyte abnormalities, hypotension, hypothermia, and those who have stopped taking insulin,.
NHS organisations throughout the UK should work to develop structured integrated pathways for the management of mental health in people with diabetes. This should include investment in education to upskill healthcare professionals. Further research into the role of pharmacists in contributing more to the psychological and emotional wellbeing of people living with diabetes across all sectors would be beneficial.
Local decision-making groups, such as local pharmaceutical committees, clinical commissioning groups, primary care networks and secondary care trusts need to work together to develop pathways of psychological support across all levels of need. This may incorporate, for example, the development of structured education packages, new advanced care services in community and better access for out of hours support using community hubs.
The ‘NHS Long Term Plan’ supports clinical pharmacist prescribers as a central part of multidisciplinary teams. As specialist roles develop within this new structure, opportunities to provide bridging roles across both primary and secondary care settings will personalise care and achieve better outcomes. Parity of esteem between emotional and physical wellbeing is essential in the management of long-term conditions and pharmacists will provide a key role in supporting this in the future.
About the authors
Hannah Beba is senior pharmacist of diabetes and endocrinology and Daniel Jukes is a pharmacist; both at County Durham and Darlington NHS Foundation Trust
This article has been peer reviewed by relevant subject experts prior to acceptance for publication. The reviewers declared no relevant affiliations or financial involvement with any organisation or entity with a financial interest in or in financial conflict with the subject matter or materials discussed in this article.
Financial and conflicts of interest disclosure
The authors have no relevant affiliations or financial involvement with any organisation or entity with a financial interest in or financial conflict with the subject matter or materials discussed in this manuscript. No writing assistance was used in the production of this manuscript.
Citation: The Pharmaceutical Journal DOI: 10.1211/PJ.2020.20208215
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